So, today I get my records from Hopkins - the record where my neurologist there listed every lesion location (6 in all - 2 of which he leads to be old lesions). I research every location, they all correlate with symptoms I've been having since April - the 'old' lesions correlate to symptoms I've had since 2000.
But, what does this neuro say in his opinion? That my symptoms are psychogenic - so my new local neuro didn't decide this all on her own. How can a dr say symptoms are psychogenic when the physical evidence points to the exact symptoms I've been having?
Quite honestly, how can any doctor diagnose a clinical depression with psychogenic symptoms after exactly two office visits - which is all either of these doctors have had with me?
I, not unlike any of you, am a complex creature. First of all, I distrust doctors. Only my family doctor understands this, and only she has a true relationship with me at this point. She does not feel I am depressed.
I was diagnosed with a proper depression back in 2000-2001 - yes, I was depressed then. I finally was married to my high school sweetheart, with two beautiful young children, and doctors told us he had only two years to live. Um - would you be a tad depressed? Add to that you've lost a good portion of the vision in your right eye, are dizzy on a daily basis, limping, and so damned tired you can barely get yourself out of bed. Oh, and then add to that the fact that even though you have to deal with all this, and you decided you need to see a doctor for help - the doctor decided you're just depressed, despite the fact they may have found your very first lesion on MRI.
So, you go to the neuropsychiatrist - and he says, yes, you have this mild situational depression, but no - it's not likely causing your symptoms. You go back to your neuro and he says - Spinal Tap. Twenty-something you with the two small kids and the dying husband runs in the other direction as fast as your limping self can.
How many times do you need to go to the neuropsychiatrist to prove you're not crazy or depressed?
So, I don't trust doctors and I don't like allopathic medications. That puts me on a list right away - or maybe more. I'm noncompliant at first glance, and likely paranoid.
Add to this the fact that I was shoved into a career I never wanted, and denied the chance to live the life I always did want (homesteader and artist) - the financial hardships we've endured with a disabled head of household, the inequalities I've faced in the workplace, and the guilt of not being here for my kids as they grew up. And I still managed to climb the ladder, raise the kids, plant and harvest and preserve the gardens, run a small business on the side - I made my happiness. No one would call me depressed, even though I certainly could have been.
Now here I am, two neurologists who claim psychogenic symptoms due to depression - even though I have no symptoms of a clinical depression and do have physical evidence of lesions that correlate with all of my symptoms. What are my choices here?
Do I seek another neuropsychiatrist to 'clear my name?' Do I go back to either of these neuros and question them? Do I return to the neuro I started with who didn't pay much attention to my needs? or do I look for yet another neuro?
Saturday, December 29, 2012
Saturday, December 15, 2012
Oh No - Not Again!
I visited my new neurologist - optimistic that she could help me, only to be told my symptoms are likely psychogenic.
I felt like I was in an office 12 year earlier - the same suggestion - a referral to a neuropsychiatrist - feeling like I shouldn't be feeling the pain I'm feeling. The neuropsychiatrist determined that my symptoms were not psychosomatic or psychogenic - but had some other cause.
I was asked to submit to a lumbar puncture (spinal tap) at that time back in 2001 - I refused. My husband just having been diagnosed with scleroderma and two small children to care for - a career to try to build with no education or training - I couldn't do it.
Now, here I am again with this same cop-off, even having been formally diagnosed with MS TWICE.
I give up.
I felt like I was in an office 12 year earlier - the same suggestion - a referral to a neuropsychiatrist - feeling like I shouldn't be feeling the pain I'm feeling. The neuropsychiatrist determined that my symptoms were not psychosomatic or psychogenic - but had some other cause.
I was asked to submit to a lumbar puncture (spinal tap) at that time back in 2001 - I refused. My husband just having been diagnosed with scleroderma and two small children to care for - a career to try to build with no education or training - I couldn't do it.
Now, here I am again with this same cop-off, even having been formally diagnosed with MS TWICE.
I give up.
Monday, December 10, 2012
When to call a Doctor
This morning in PT - another seriously over the top work out of the bad leg that led to yet another fall - I explained the tremors since doing the steroid therapy. My therapist felt this should be reported to the doctor.
When you have MS, there are so many sensations, pains, and quirks that go with the MonSter - they become part of your every day. You learn the sinking, foggy feeling that signals your headed into the afternoon activity-stopping fatigue-the one, if you don't obey, will take out your voice, your legs, your concentration. You learn how far you can walk before your legs will just collapse, and how much is too much. You learn new ways to do almost everything you do every day, and how little you really can do.
So, when is it time to call a doctor? Since the steroids, I go into a tremulous fit every time I stand from a seated position (I know, weird, right? - most of this is). I have tingling in my hands now - both of them - pretty regularly. The tremors in my arms and hands are persistent and new.
More than anything, since the steroids, I am much more confused. I learned yesterday the reason I'm having so much trouble crocheting is because I am having a lot of trouble counting. This was one of the only things I could come up with that I might be able to do to make money, though likely far from a livable salary. Now, another path shut down.
My words just aren't coming and, worst of all, the speech problems have begun to resurface. I wonder did I not take enough steroid, but what would have happened if I did? In any case, it's time to fess up and see if the dosage really was right, or if this MonSter just isn't going to stop anymore. So, I've called the Doctor.
When you have MS, there are so many sensations, pains, and quirks that go with the MonSter - they become part of your every day. You learn the sinking, foggy feeling that signals your headed into the afternoon activity-stopping fatigue-the one, if you don't obey, will take out your voice, your legs, your concentration. You learn how far you can walk before your legs will just collapse, and how much is too much. You learn new ways to do almost everything you do every day, and how little you really can do.
So, when is it time to call a doctor? Since the steroids, I go into a tremulous fit every time I stand from a seated position (I know, weird, right? - most of this is). I have tingling in my hands now - both of them - pretty regularly. The tremors in my arms and hands are persistent and new.
More than anything, since the steroids, I am much more confused. I learned yesterday the reason I'm having so much trouble crocheting is because I am having a lot of trouble counting. This was one of the only things I could come up with that I might be able to do to make money, though likely far from a livable salary. Now, another path shut down.
My words just aren't coming and, worst of all, the speech problems have begun to resurface. I wonder did I not take enough steroid, but what would have happened if I did? In any case, it's time to fess up and see if the dosage really was right, or if this MonSter just isn't going to stop anymore. So, I've called the Doctor.
Thursday, December 6, 2012
SO Confused
Literally - about a lot of things, but just in general even more.
I'm making holiday gifts. Somehow, I managed to knit in the wrong direction several times this morning - making a very lopsided start to a vest. I had to rip the project out three times this morning, taking me hours, getting tired and needing a nap thinking that would make things better. It didn't.
I decided to make lunch. I made an egg with brown rice. It was really good - shared with the dogs, only to return to the kitchen to find the miso soup I'd made earlier on the counter. I left it there to cool and completely forgot it was there.
Yesterday, I turned on my tea kettle for tea, forgot about it until the smoke came. No more tea kettle.
I've had better days :(
I'm making holiday gifts. Somehow, I managed to knit in the wrong direction several times this morning - making a very lopsided start to a vest. I had to rip the project out three times this morning, taking me hours, getting tired and needing a nap thinking that would make things better. It didn't.
I decided to make lunch. I made an egg with brown rice. It was really good - shared with the dogs, only to return to the kitchen to find the miso soup I'd made earlier on the counter. I left it there to cool and completely forgot it was there.
Yesterday, I turned on my tea kettle for tea, forgot about it until the smoke came. No more tea kettle.
I've had better days :(
Monday, November 26, 2012
A little psychosis anyone?
By my research, all of the dexamethasone should be out of my system now. I'm still having a lot of pain, some in places I did not have it before, like my spine. I am having tremors in arms, hands, and legs frequently. I had never really had hand/arm tremors before. I also have frequent tingling in the fingers of both hands, but mostly the left - which is not the side I normally had the majority of symptoms before.
My memory and concentration seem to be about the same as they were before. Attention is much worse - I am working on crocheting holiday gifts and have to work on three or four at a time to get them done because I lose interest in the project pretty quickly. I have a lot of trouble planning as well - right now my focus is on the holiday gifts, so that's all there is to me. I know there are other things I should do, but even when I sit and try to think what they are, I may come up with one or two - but I don't know what priority they are, or if I even should actually worry about them. Confusion is worse, anything I try to figure out, I usually end up finding is wrong - this is becoming really worrisome where bill paying is concerned.
What is really scaring me, though, is the possibility of psychosis. Research shows this to be possible due to steroid therapy (in which case it should go away now), but also is possible in MS, and in Chiari Malformation (which my very first MRI in 2000 revealed). The problem is, I am afraid maybe this didn't just start. I was told I acted completely inappropriate, yelling, angry, stomping in a situation that I felt only confused about. This really scared me. What scared me more is that I don't think this is the first time this happened. I remember other times my soulmate told me I acted out of character or inappropriately. I have been hearing voices and seeing flashes for several years, usually when sleeping, or just settling down. Then add the long strings of nonsensical speech that plague me.
I don't want the medication - I never want to do steroids again. I have no choice then but to do my best to not talk in public situations, let my soulmate do the talking, and hope this is the steroids and will get better. At least my dogs understand me.
My memory and concentration seem to be about the same as they were before. Attention is much worse - I am working on crocheting holiday gifts and have to work on three or four at a time to get them done because I lose interest in the project pretty quickly. I have a lot of trouble planning as well - right now my focus is on the holiday gifts, so that's all there is to me. I know there are other things I should do, but even when I sit and try to think what they are, I may come up with one or two - but I don't know what priority they are, or if I even should actually worry about them. Confusion is worse, anything I try to figure out, I usually end up finding is wrong - this is becoming really worrisome where bill paying is concerned.
What is really scaring me, though, is the possibility of psychosis. Research shows this to be possible due to steroid therapy (in which case it should go away now), but also is possible in MS, and in Chiari Malformation (which my very first MRI in 2000 revealed). The problem is, I am afraid maybe this didn't just start. I was told I acted completely inappropriate, yelling, angry, stomping in a situation that I felt only confused about. This really scared me. What scared me more is that I don't think this is the first time this happened. I remember other times my soulmate told me I acted out of character or inappropriately. I have been hearing voices and seeing flashes for several years, usually when sleeping, or just settling down. Then add the long strings of nonsensical speech that plague me.
I don't want the medication - I never want to do steroids again. I have no choice then but to do my best to not talk in public situations, let my soulmate do the talking, and hope this is the steroids and will get better. At least my dogs understand me.
Saturday, November 24, 2012
New symptoms - post steroids
My last dose of dexamethasone was on Wednesday. Today is Saturday and I am still feeling the effects of the steroids. I finally could sleep last night. It was a fitful sleep, but did add up to seven hours. The voices, screaming, flashes that have been part of my four hour sojourn for the last week have also calmed down.
I have spent most of my day crashing - doing very little and then suddenly falling asleep. My stomach is upset - I believe possibly due to adrenal exhaustion. I still feel scatter-brained and just 'off.' All in all, I am absolutely exhausted.
I have been talking pretty well since about day 2 of the therapy. I do believe the steroids did something. At the same time, though, I've began having tingling fingers. I've had tingling in my feet, before I could no longer really feel them. Also in patches along my right thigh and right forearm. My fingers get very cold, turn white, red, and blue - Raynaud's syndrome - an autoimmune, usually considered rheumatologic symptom.
Only today did I first begin having the tingling in my fingers - both hands.
I have spent most of my day crashing - doing very little and then suddenly falling asleep. My stomach is upset - I believe possibly due to adrenal exhaustion. I still feel scatter-brained and just 'off.' All in all, I am absolutely exhausted.
I have been talking pretty well since about day 2 of the therapy. I do believe the steroids did something. At the same time, though, I've began having tingling fingers. I've had tingling in my feet, before I could no longer really feel them. Also in patches along my right thigh and right forearm. My fingers get very cold, turn white, red, and blue - Raynaud's syndrome - an autoimmune, usually considered rheumatologic symptom.
Only today did I first begin having the tingling in my fingers - both hands.
Thursday, November 22, 2012
Reflections
After being formally diagnosed by a doctor I much respect, I began reviewing the last 13 years of symptoms and problems I've had trying to make sense of this. I finally accepted that this is indeed MS, but has it always been? I obtained records of all of my neurology, ophthalmology, and neuropsych appointments as far back as 2000. I requested all current neurology records, tests, and some of my relevant family physician notes.
I had a documented lesion, according to my records, back in 2000. I also had documented damage to my right optic nerve that was listed as 'congenital defect'; however, on one-year follow up, the 'defect' was gone. How can something congenital just disappear?
But, the interesting question for me is - now believing I very likely had MS back in 2000 - how would a brain lesion and optic defect disappear? There is the question I am interested in.
How many times over the ebb and flow of the illness I suffered at least twice every year showed in my brain - but disappeared? Not darkened and sunk - but was gone? Could the beta blocker I took for my PSVT have done this - that which I no longer take? Could it have been one of my herbs? Is this possible?
I think I want to do a lot of research and a lot of trials - mostly natural - but, first I have to sort out the day to day.
I'm realizing the deficits I have, especially cognitive. They have only gotten worse since May 2012, steadily worse. I understand now what happened the last two days I worked my job. I find myself routinely trying to do some sort of calculation or high order thinking, the concentration for which can drop at the meow of the cat and be lost for hours or days. If I manage to concentrate long enough for the task, I'm proud of myself for completing it! In my job, this would be followed by taking out the steps I just figured out. The problem is, they are wrong. It may take me a day, a week, even a month to see it - but what I just did - wrong - all wrong. I don't know how to fix it. This is playing out in trying to pay the bills every month. My family doctor stated I need a power of attorney to help me with this. My hubby can do the bills, but he has these problems also - how do we know who is doing them right? Who do we allow to do our bills? Do we put that on our daughter? our son? Don't they have enough of this sort of thing to figure out on their own?
The physical tolls this disease takes are measurable, but the mental/psychological ones are the worst. They are invisible, misunderstood, and very hard to live with.
I had a documented lesion, according to my records, back in 2000. I also had documented damage to my right optic nerve that was listed as 'congenital defect'; however, on one-year follow up, the 'defect' was gone. How can something congenital just disappear?
But, the interesting question for me is - now believing I very likely had MS back in 2000 - how would a brain lesion and optic defect disappear? There is the question I am interested in.
How many times over the ebb and flow of the illness I suffered at least twice every year showed in my brain - but disappeared? Not darkened and sunk - but was gone? Could the beta blocker I took for my PSVT have done this - that which I no longer take? Could it have been one of my herbs? Is this possible?
I think I want to do a lot of research and a lot of trials - mostly natural - but, first I have to sort out the day to day.
I'm realizing the deficits I have, especially cognitive. They have only gotten worse since May 2012, steadily worse. I understand now what happened the last two days I worked my job. I find myself routinely trying to do some sort of calculation or high order thinking, the concentration for which can drop at the meow of the cat and be lost for hours or days. If I manage to concentrate long enough for the task, I'm proud of myself for completing it! In my job, this would be followed by taking out the steps I just figured out. The problem is, they are wrong. It may take me a day, a week, even a month to see it - but what I just did - wrong - all wrong. I don't know how to fix it. This is playing out in trying to pay the bills every month. My family doctor stated I need a power of attorney to help me with this. My hubby can do the bills, but he has these problems also - how do we know who is doing them right? Who do we allow to do our bills? Do we put that on our daughter? our son? Don't they have enough of this sort of thing to figure out on their own?
The physical tolls this disease takes are measurable, but the mental/psychological ones are the worst. They are invisible, misunderstood, and very hard to live with.
Wednesday, November 21, 2012
Living with the MonSter
In the beginning of November, I was diagnosed again with MS, this time with certainty as my lesions now show on the latest MRI. I had been unable to speak correctly since October 10. Most of the time could speak two to three word blips, other times only nonsense would come out no matter how hard I tried. This coupled with additional weakness, balance issues, brain fog, and now anxiety.
I found a new local neurologist who is very nice. The local neuro prescribed a course of steroid therapy, the Hopkins neuro agreed this was necessary. The IV steroid therapy for MS exacerbation would have cost $550 I just do not have. So I originally refused this.
After some research, I found that oral steroid therapy was proven to be just as effective, though harder to stomach. My cost for oral therapy - $0. I requested a script from the local neuro and she obliged very quickly. I was perplexed when I received a bottle of dexamethasone indicating I should take 20 tablets, 4mg each, each day for 5 days. All of the research I had done indicated this dose had been backed off to a very effective 40 mg dose in one week, either all at once, or over a 4 day course. After polling other MS sufferers who have used this therapy, I decided to go with the latter dosing.
Sunday morning, I took 16 mg; Monday, 12 mg; Tuesday, 8 mg; this morning, 4 mg
I have had about six hours of sleep since Sunday night. My balance and mobility have gotten steadily worse over the last four days. Any fast or up and down movement brings on heart palpitations (something I am used to dealing with having suffered PSVT for most of my life). I shake uncontrollably every time I get up and cannot stand for long without swaying quite a bit. My face is flush, legs are swollen, mind is very confused, eyes hurt and vision is cloudy. Caffeine seems to help the constant waking headache and bland food helps the nausea.
I thought the dex was helping my pain - getting down to a level 3 on day 2; however, by the end of that day, I was back up to a level 8. Now with severe joint and muscle pain, along with the returning burning. I am talking better - still unable to get a word out now and then, still forgetting words and occassionally stumbling - but I can make a sentence and get out what I want to say, even if I have to search a different word.
All in all - I don't think I will do this again. I really believe I need to get back on the natural track to whatever level of health I can achieve.
As best I can tell, it will take until Sunday to get all of the steroids out of my system. Then, I will really see if they did me any good - once I catch up on some sleep.
I found a new local neurologist who is very nice. The local neuro prescribed a course of steroid therapy, the Hopkins neuro agreed this was necessary. The IV steroid therapy for MS exacerbation would have cost $550 I just do not have. So I originally refused this.
After some research, I found that oral steroid therapy was proven to be just as effective, though harder to stomach. My cost for oral therapy - $0. I requested a script from the local neuro and she obliged very quickly. I was perplexed when I received a bottle of dexamethasone indicating I should take 20 tablets, 4mg each, each day for 5 days. All of the research I had done indicated this dose had been backed off to a very effective 40 mg dose in one week, either all at once, or over a 4 day course. After polling other MS sufferers who have used this therapy, I decided to go with the latter dosing.
Sunday morning, I took 16 mg; Monday, 12 mg; Tuesday, 8 mg; this morning, 4 mg
I have had about six hours of sleep since Sunday night. My balance and mobility have gotten steadily worse over the last four days. Any fast or up and down movement brings on heart palpitations (something I am used to dealing with having suffered PSVT for most of my life). I shake uncontrollably every time I get up and cannot stand for long without swaying quite a bit. My face is flush, legs are swollen, mind is very confused, eyes hurt and vision is cloudy. Caffeine seems to help the constant waking headache and bland food helps the nausea.
I thought the dex was helping my pain - getting down to a level 3 on day 2; however, by the end of that day, I was back up to a level 8. Now with severe joint and muscle pain, along with the returning burning. I am talking better - still unable to get a word out now and then, still forgetting words and occassionally stumbling - but I can make a sentence and get out what I want to say, even if I have to search a different word.
All in all - I don't think I will do this again. I really believe I need to get back on the natural track to whatever level of health I can achieve.
As best I can tell, it will take until Sunday to get all of the steroids out of my system. Then, I will really see if they did me any good - once I catch up on some sleep.
Tuesday, October 23, 2012
2012 . 10 . 23 - LOST
Once again, medical leave denied and notified I'm being terminated. How can you be told you can have medical leave for one year, then they continually ask you to recertify and deny your leave. I am diagnosed with multiple sclerosis and there has been no improvement over six months, only new symptoms.
I am considering just resigning. Maybe without this constant stress, I could find some path to improvement? The biggest problem, is I can't afford health coverage if I do this - or if they terminate me.
I've barely been able to get treatment though because it seems like every single appointment carries another stack of paperwork that needs to be completed. And there is no heath care crisis in this country?
I am considering just resigning. Maybe without this constant stress, I could find some path to improvement? The biggest problem, is I can't afford health coverage if I do this - or if they terminate me.
I've barely been able to get treatment though because it seems like every single appointment carries another stack of paperwork that needs to be completed. And there is no heath care crisis in this country?
Friday, October 19, 2012
2012 . 10 . 19
I had physical therapy this morning. My PT therapist told me there are so many advantages to the wheelchair she ordered for me. I can keep going after my legs collapse, get to the top of my yard sometimes, go to the store even when I'm tired - oh yeah ...
I learned tonite what it means to an important relationship to not be able to communicate, to communicate innapropriately and then get mad at yourself for doing so. This is really hard. It's making me think there is no point in even trying to talk. Nothing really is understood well. And it just makes me really sad. Really, really sad.
We also talked, the day after my latest MRI, about my diagnosis - and my absent doctor, who is also, I've learned, the absent doctor for many in my area who have a diagnosis of MS. Yesterday, a nurse from Shared Solutions, the company who manages all medications for MS, stated that what I am going through right now indicates an exacerbation of MS and likely should be treated with steroids. I didn't get steroid therapy for the last or any previous possible exacerbation, why would I expect it for this one?
My PT therapist and I also talked about my fear of another diagnosis - one that only my neuro at Hopkins would find. If my MRI yesterday does not show lesions, I am very confident and afraid that the diagnosis will be ALS. And, already, I've gotten myself isolated because of language difficulty.
Not a good night....
I learned tonite what it means to an important relationship to not be able to communicate, to communicate innapropriately and then get mad at yourself for doing so. This is really hard. It's making me think there is no point in even trying to talk. Nothing really is understood well. And it just makes me really sad. Really, really sad.
We also talked, the day after my latest MRI, about my diagnosis - and my absent doctor, who is also, I've learned, the absent doctor for many in my area who have a diagnosis of MS. Yesterday, a nurse from Shared Solutions, the company who manages all medications for MS, stated that what I am going through right now indicates an exacerbation of MS and likely should be treated with steroids. I didn't get steroid therapy for the last or any previous possible exacerbation, why would I expect it for this one?
My PT therapist and I also talked about my fear of another diagnosis - one that only my neuro at Hopkins would find. If my MRI yesterday does not show lesions, I am very confident and afraid that the diagnosis will be ALS. And, already, I've gotten myself isolated because of language difficulty.
Not a good night....
Wednesday, October 17, 2012
2012 . 10 . 17
So today was the day I heard the word I've been dreading ... wheelchair.
Yesterday afternoon, what I suppose was inevitable, but didn't expect for at least a few years, happened. I couldn't get up from my chair. This would be comical if for some silly reason, like having too much fun or too much to drink. As it was, I was horrified. No amount of effort could get these legs to push me into a standing position.
Several times through the afternoon and evening, my hubby lovingly lifted me up so I could drag my legs into another room, thanks only to my cane. It was just after dinner when I broke down in tears, no sobs. I was sure I wouldn't be able to get up the stairs to go to bed.
I could probably handle this under somewhat normal circumstances, but with the house still in renovation mode - month 6 - there is nowhere to sleep downstairs. At least, not anywhere near comfortably.
Morning proved my legs only better enough to get me up and down with much effort. I had physical therapy this morning. Admitted to my therapist that my legs feel 'dead.' After having me do a few gentle exercises, she took my husband aside and told him - as if I were not even there - that she was sending request to my doctor for a wheelchair evaluation.
I still can't speak but a few words at a time, and they usually don't make a lot of sense unless you've lived with me as long as my life partner has. So, all I could do is cry.
My second brain/C-spine MRI is tomorrow. It stinks to even say this, but I hope they find the lesions. After reviewing all the medical records (including my LP results that DID test for Lyme's) I have managed to get copies of, I am convinced that yes, I do have Multiple Sclerosis. And it is progressive. Having a mind that leans more toward science - I need to *see* it. I know you're there....show yourself.
How just like my chaotic, upside-down life would it be to end up in a wheelchair from MS before they ever actually SEE my lesions?
Yesterday afternoon, what I suppose was inevitable, but didn't expect for at least a few years, happened. I couldn't get up from my chair. This would be comical if for some silly reason, like having too much fun or too much to drink. As it was, I was horrified. No amount of effort could get these legs to push me into a standing position.
Several times through the afternoon and evening, my hubby lovingly lifted me up so I could drag my legs into another room, thanks only to my cane. It was just after dinner when I broke down in tears, no sobs. I was sure I wouldn't be able to get up the stairs to go to bed.
I could probably handle this under somewhat normal circumstances, but with the house still in renovation mode - month 6 - there is nowhere to sleep downstairs. At least, not anywhere near comfortably.
Morning proved my legs only better enough to get me up and down with much effort. I had physical therapy this morning. Admitted to my therapist that my legs feel 'dead.' After having me do a few gentle exercises, she took my husband aside and told him - as if I were not even there - that she was sending request to my doctor for a wheelchair evaluation.
I still can't speak but a few words at a time, and they usually don't make a lot of sense unless you've lived with me as long as my life partner has. So, all I could do is cry.
My second brain/C-spine MRI is tomorrow. It stinks to even say this, but I hope they find the lesions. After reviewing all the medical records (including my LP results that DID test for Lyme's) I have managed to get copies of, I am convinced that yes, I do have Multiple Sclerosis. And it is progressive. Having a mind that leans more toward science - I need to *see* it. I know you're there....show yourself.
How just like my chaotic, upside-down life would it be to end up in a wheelchair from MS before they ever actually SEE my lesions?
Monday, October 15, 2012
2012 . 10 . 15
The day began with the familiar flash of blue upon opening my eyes. It's always hard to see at first, but clearer comes the web and grandmother spider. She crawls right to my face until I can see her crystalized eyes. What is it, grandmother? Is she plucking my thread? Or, telling me of another? I hear the dogs beckoning me to let them out and know I need to go before I'm ready, or She is finished with me. Slowly I sit up to dress as the vision fades from my eyes.
I worry for awhile that She is telling me my almost 94-year-old grandmother may have passed. But, thankfully, no such news. I wonder and worry, another? Then, having not been able to speak normally, or sometimes at all, for almost a week now I wonder - is this life almost over?
More forms - forms and forms and forms. When is a person supposed to heal? rest? recover? or learn to live with what they've been diagnosed with? Let alone, find the believable evidence to prove the diagnosis, or find the right one? The medication I'm on doesn't even become effective, when it's effective (30% of the time) for 3 to 9 months. I'm not even 3 months in.
We call (because no one can understand me on a phone, they just hang up) and hubby tries to get me appointment with my PCP to help with paperwork. No appointments - they say bring forms up. So, hubby runs me in to office to drop of the forms. After 20 questions, I think she may get them today, but I'll have another set in a week or so. I'm sure. No relief. No kind of life.
I realize one of the forms is asking me to resign from my job. I was told I would be on leave for one year - well, that's more than 3 months, more than 6 months, more than 9 months. There was a glimmer of hope. But now, unable to speak, in pain, so tired, no better at remembering or concentrating - what now? There are too many questions and no way to get answers when you can't speak legibly on the phone. What now?
I worry for awhile that She is telling me my almost 94-year-old grandmother may have passed. But, thankfully, no such news. I wonder and worry, another? Then, having not been able to speak normally, or sometimes at all, for almost a week now I wonder - is this life almost over?
More forms - forms and forms and forms. When is a person supposed to heal? rest? recover? or learn to live with what they've been diagnosed with? Let alone, find the believable evidence to prove the diagnosis, or find the right one? The medication I'm on doesn't even become effective, when it's effective (30% of the time) for 3 to 9 months. I'm not even 3 months in.
We call (because no one can understand me on a phone, they just hang up) and hubby tries to get me appointment with my PCP to help with paperwork. No appointments - they say bring forms up. So, hubby runs me in to office to drop of the forms. After 20 questions, I think she may get them today, but I'll have another set in a week or so. I'm sure. No relief. No kind of life.
I realize one of the forms is asking me to resign from my job. I was told I would be on leave for one year - well, that's more than 3 months, more than 6 months, more than 9 months. There was a glimmer of hope. But now, unable to speak, in pain, so tired, no better at remembering or concentrating - what now? There are too many questions and no way to get answers when you can't speak legibly on the phone. What now?
Tuesday, October 9, 2012
2012 . 10 . 09
Days like this are from some other dimension. How you can be feeling ok - usual fatigue-ridden, painful, forgetful day - then horrendous, can't do a thing day.
I can't comprehend a crochet pattern today - this was the first indication as I sat with a cup of tea and wanted to work on a holiday gift. I did the same row five times. I'm pretty sure it's still not right, but I can't be certain. So I gave up. This is the theme of the day - give it a try, try it again, give up and do something else until you've exhausted most of your options given the mobility issue. Beer anyone? Pain relief and relief from wishing to do any other productive thing.
Next my leg decided it doesn't belong to this body. It drags behind me when I try to walk or flops down and at least holds a little of my weight. It's an all day cane day.
Then I try to ask my hubby if there is anything I can do to help him - caboladoamiaenmtmekaeoianteontoinatoientlak - nevermind :(
Not a shot day, but injection sites from the last week are itching intensely - another side affect of Copaxone.
I had conversation with the neuro at Hopkins today - he's ordering more tests. My mission is to get them done and results before my Nov 5 appt. I ordered additional medical records as well. I hope he has an answer on Nov 5.
I let him know about a conversation I had with my neighbor's sister. She has symptoms almost identical to mine, and was diagnosed with Multiple Sclerosis, as I have been. It was later discovered that was she actually had was late disseminated lyme's disease. The disease has caused irreversible neurologic damage. Now under control, she is still unable to work or do much each day. She spends her days after treatment much like I do now - a few hours at a time.
I researched this, and one key difference in our cases is that she did test positive for lyme antibody - I do not. Although I've had lyme's disease at least three times that I can remember, all were treated promptly and I have tested negative on every titre. I realize it's entirely possible that this could still be an issue, so I mentioned it to my neuro at Hopkins.
I'm SO cold today - no matter what I do - so so so cold. Having tremors - pain is at least a 7.
Thank goodness I don't have to cook dinner today - I'd likely kill us the way the day is going.
I can't comprehend a crochet pattern today - this was the first indication as I sat with a cup of tea and wanted to work on a holiday gift. I did the same row five times. I'm pretty sure it's still not right, but I can't be certain. So I gave up. This is the theme of the day - give it a try, try it again, give up and do something else until you've exhausted most of your options given the mobility issue. Beer anyone? Pain relief and relief from wishing to do any other productive thing.
Next my leg decided it doesn't belong to this body. It drags behind me when I try to walk or flops down and at least holds a little of my weight. It's an all day cane day.
Then I try to ask my hubby if there is anything I can do to help him - caboladoamiaenmtmekaeoianteontoinatoientlak - nevermind :(
Not a shot day, but injection sites from the last week are itching intensely - another side affect of Copaxone.
I had conversation with the neuro at Hopkins today - he's ordering more tests. My mission is to get them done and results before my Nov 5 appt. I ordered additional medical records as well. I hope he has an answer on Nov 5.
I let him know about a conversation I had with my neighbor's sister. She has symptoms almost identical to mine, and was diagnosed with Multiple Sclerosis, as I have been. It was later discovered that was she actually had was late disseminated lyme's disease. The disease has caused irreversible neurologic damage. Now under control, she is still unable to work or do much each day. She spends her days after treatment much like I do now - a few hours at a time.
I researched this, and one key difference in our cases is that she did test positive for lyme antibody - I do not. Although I've had lyme's disease at least three times that I can remember, all were treated promptly and I have tested negative on every titre. I realize it's entirely possible that this could still be an issue, so I mentioned it to my neuro at Hopkins.
I'm SO cold today - no matter what I do - so so so cold. Having tremors - pain is at least a 7.
Thank goodness I don't have to cook dinner today - I'd likely kill us the way the day is going.
Tuesday, October 2, 2012
2012 . 10 . 02
So, today's lesson is this - my brain is really f-d up.
I had a lip biopsy for the doc at Hopkins yesterday, to prove or disprove that I might have Sjogren's syndrome in addition to, or instead of MS. I loved the doc who did this - he did his best to convince me this is an unnecessary procedure. He didn't have to convince me, I was totally on board and would like to have told him, okay, I pass. Especially when he mentioned there is a 40-60% false negative for this test. Hmmmmm ....
But, given my loyalty to this doc, I allowed my bottom lip to be cut open so they could harvest a few salivary glands for examination. I haven't eaten much in the way of solid food since. My tarot cards said this is a bad idea - unfortunately, I didn't consult them until AFTER the procedure. My bad.
I had planned, for the second week in a row, on visiting the local Farmer's Market (one of the many we are blessed to have in our area) and pick up some fruit for us, some snacks and dinner for our daughter, and maybe dinner for us. It is an absolutely horrid day here - steady, heavy rain, fog, damp, cold - a really bad day anyone with an autoimmune disorder would understand. Even when I wasn't having debilitating symptoms over the last 12 years, a really cold, damp, dreary day would always knock me back.
Dear hubby said NO. Not only was the weather bad, but the market I wanted to go to was so much walking, even to get from the car to the parking lot. I lost my balance yesterday afternoon. It's never good, but really, I left it somewhere on the hospital campus - it hit suddenly. It's still not back, even to my new normal levels. So, we stayed home.
I tried several things today from my chaotic brain cloud - none of them turned out well. On top of that, I'm hungry, but can't really eat. I gave up. I did what my sweetheart has been telling me to do for weeks - nothing. I grabbed a homemade brew (I can drink - protein, glucose, carbohydrate, and potassium) and did something I rarely do - turned on the TV and watched a movie.
At the end of the movie I realized - I felt better. No, I still don't have my balance, still can't chew, still have pain and tremors - but the chaos is quiet. This is bad. I realized I am messed up even more than I realized. The source of my only true angst is this chaos in my head that takes away my concentration, my memory, my speech. Today I realized, I have to stop thinking. Just stop.
When I stop trying to figure everything out, I feel better. This sounds elementary - try to find space in this squeezed together reno household to meditate again? That might be an answer, or might be a scarier place - not sure. Or just forget it all? I'm close to that. The bills needed done last Friday - it's - um - Tuesday (looked at the calendar) - nope, still can't figure them out. My family doc says I should get a power of attorney so hubby or our kids can do the bills. No way. I see what my poor hubby goes through trying to take care of this stuff for his aging father. I never want to do that to my kids.
So, what is the answer? Well, I need a lot of answers - the first is the title of the blog. But, I don't know what to do about the loss of concentration, memory, speech and the chaos of every day in my head. Yesterday, when we were in the waiting room waiting to be called for my procedure, I overheard a man tell his son, "You don't want to have damage to your brain - what do you want to have to sit around drooling, doing nothing but watching soap operas all day?" I wanted to hit him. In my experience, the look I threw him should suffice. But, maybe he was right - maybe that is the only thing to appease your tired, chaotic brain when it no longer works for you....
I had a lip biopsy for the doc at Hopkins yesterday, to prove or disprove that I might have Sjogren's syndrome in addition to, or instead of MS. I loved the doc who did this - he did his best to convince me this is an unnecessary procedure. He didn't have to convince me, I was totally on board and would like to have told him, okay, I pass. Especially when he mentioned there is a 40-60% false negative for this test. Hmmmmm ....
But, given my loyalty to this doc, I allowed my bottom lip to be cut open so they could harvest a few salivary glands for examination. I haven't eaten much in the way of solid food since. My tarot cards said this is a bad idea - unfortunately, I didn't consult them until AFTER the procedure. My bad.
I had planned, for the second week in a row, on visiting the local Farmer's Market (one of the many we are blessed to have in our area) and pick up some fruit for us, some snacks and dinner for our daughter, and maybe dinner for us. It is an absolutely horrid day here - steady, heavy rain, fog, damp, cold - a really bad day anyone with an autoimmune disorder would understand. Even when I wasn't having debilitating symptoms over the last 12 years, a really cold, damp, dreary day would always knock me back.
Dear hubby said NO. Not only was the weather bad, but the market I wanted to go to was so much walking, even to get from the car to the parking lot. I lost my balance yesterday afternoon. It's never good, but really, I left it somewhere on the hospital campus - it hit suddenly. It's still not back, even to my new normal levels. So, we stayed home.
I tried several things today from my chaotic brain cloud - none of them turned out well. On top of that, I'm hungry, but can't really eat. I gave up. I did what my sweetheart has been telling me to do for weeks - nothing. I grabbed a homemade brew (I can drink - protein, glucose, carbohydrate, and potassium) and did something I rarely do - turned on the TV and watched a movie.
At the end of the movie I realized - I felt better. No, I still don't have my balance, still can't chew, still have pain and tremors - but the chaos is quiet. This is bad. I realized I am messed up even more than I realized. The source of my only true angst is this chaos in my head that takes away my concentration, my memory, my speech. Today I realized, I have to stop thinking. Just stop.
When I stop trying to figure everything out, I feel better. This sounds elementary - try to find space in this squeezed together reno household to meditate again? That might be an answer, or might be a scarier place - not sure. Or just forget it all? I'm close to that. The bills needed done last Friday - it's - um - Tuesday (looked at the calendar) - nope, still can't figure them out. My family doc says I should get a power of attorney so hubby or our kids can do the bills. No way. I see what my poor hubby goes through trying to take care of this stuff for his aging father. I never want to do that to my kids.
So, what is the answer? Well, I need a lot of answers - the first is the title of the blog. But, I don't know what to do about the loss of concentration, memory, speech and the chaos of every day in my head. Yesterday, when we were in the waiting room waiting to be called for my procedure, I overheard a man tell his son, "You don't want to have damage to your brain - what do you want to have to sit around drooling, doing nothing but watching soap operas all day?" I wanted to hit him. In my experience, the look I threw him should suffice. But, maybe he was right - maybe that is the only thing to appease your tired, chaotic brain when it no longer works for you....
Sunday, September 30, 2012
2012 . 09 . 30
I woke up at 3:00 a.m. this morning - let the dogs out, went back to bed. Five minutes later, hubby got up - let the dogs out, didn't come back to bed. So I got up too. We watched some bad late night TV, then decided to go to breakfast :-) We got dressed and headed out under a full moon for our first meal of the day.
When we got home, I did my Copaxone injection, hit a muscle (OUCH!) and promptly fell asleep. Early morning naps might just be a regular event. I'm not feeling too bad since waking up. I'm taking advantage of this! My mind isn't comprehending my crochet patterns yet. I'm not going to worry about it. One project is an afghan that is single crochet for 52 rows per square. I can handle that one.
I realized yesterday that part of what is depressing me is feeling like I'm not getting anything done. I think what is happening is that my brain can still think of all the things I 'could' do, or need to do, but it isn't able to prioritize what should be done or even decide what I'd 'like' to do. As a result, I have this big cloud of possibilities in there and it's very hard to get them out - so I only do what is in front of me: the dogs need to eat, we need to eat, I have to wash clothes if I want to wear them. Even some of those things get lost in the mist.
So, I think it's really important to record somewhere every time I think of one of these things. I started entering them on my calendar on the computer because it can even alert me of tasks even if I've likely forgotten them. Of course, then it still depends on having the energy to do them. My list wasn't large by most people's standards today, but I know I will not be able to do everything. Today was do laundry, make a loaf of bread, make a salad and dressing for dinner, harvest spinach and freeze. Spinach can wait - laundry is almost done - hubby said he'd buy bread and salad dressing. If I can pick and wash everything for the salad, I need to feel accomplished then. And, anything I find that needs done and I have the energy to do til I crash tonite is a bonus. I really can't explain the energy drain. Imagine you walked around all day long with a wet, heavy blanket over your head, and 50 lb weights on your legs.
Still there is this fog over me that I haven't been able to shake since April. It's hard to explain, but it really takes enjoyment out of a lot of the day, even if I'm doing something I really liked to do.
When we got home, I did my Copaxone injection, hit a muscle (OUCH!) and promptly fell asleep. Early morning naps might just be a regular event. I'm not feeling too bad since waking up. I'm taking advantage of this! My mind isn't comprehending my crochet patterns yet. I'm not going to worry about it. One project is an afghan that is single crochet for 52 rows per square. I can handle that one.
I realized yesterday that part of what is depressing me is feeling like I'm not getting anything done. I think what is happening is that my brain can still think of all the things I 'could' do, or need to do, but it isn't able to prioritize what should be done or even decide what I'd 'like' to do. As a result, I have this big cloud of possibilities in there and it's very hard to get them out - so I only do what is in front of me: the dogs need to eat, we need to eat, I have to wash clothes if I want to wear them. Even some of those things get lost in the mist.
So, I think it's really important to record somewhere every time I think of one of these things. I started entering them on my calendar on the computer because it can even alert me of tasks even if I've likely forgotten them. Of course, then it still depends on having the energy to do them. My list wasn't large by most people's standards today, but I know I will not be able to do everything. Today was do laundry, make a loaf of bread, make a salad and dressing for dinner, harvest spinach and freeze. Spinach can wait - laundry is almost done - hubby said he'd buy bread and salad dressing. If I can pick and wash everything for the salad, I need to feel accomplished then. And, anything I find that needs done and I have the energy to do til I crash tonite is a bonus. I really can't explain the energy drain. Imagine you walked around all day long with a wet, heavy blanket over your head, and 50 lb weights on your legs.
Still there is this fog over me that I haven't been able to shake since April. It's hard to explain, but it really takes enjoyment out of a lot of the day, even if I'm doing something I really liked to do.
Saturday, September 29, 2012
2012 . 09 . 29
All I wanted to do this morning is sleep. I don't feel 'right' around my middle - I think it's the muscles around my stomach, hips, and lower back. I'm certain this is from PT yesterday - holding all these muscles as tight as possible to try and keep my balance. Well, there is no balance really, it's more like surfing with an invisible board, arms out, dipping this way and that, trying not to touch the bar on either side. Couple that with the exercises aimed at building the core muscles - I think this is what happened.
But, I don't get that nice, healthy burn of freshly worked muscles that I used to. I actually liked that kind of pain - makes you feel alive. Now, if I 'overwork' muscles (which is to say, barely work), they quiver with this very sick kind of feeling that edges on cramping helplessly. It's hard to explain the vague feelings and little wonder why it's so hard to diagnose, but YOU know it's just not right.
Some doctors tell me to keep going - other doctors tell me just rest - my PT therapist says just move at least 15 minutes a day, then rest.
From experience over the last five months (wow, have I been down THAT long? :( I have learned that I have a limited amount of energy. The energy bank is usually replenished after a mediocre night's sleep. I have 3-4 hours on an average day to do the things I want to do that involve walking, bending, or any kind of concentrated mind work, like paying bills. After this, whether I lie down, take a nap, pop all the vitamins I have, I start wearing down. If I stick to 15-30 minutes of activity during this time, I might actually be able to do another 15-30 minutes in the afternoon as long as I do something quiet pretty much the rest of the day.
Getting the food from the garden put away required no less than 2 hours of seriously difficult activity. I would do as much as possible sitting on a stool in the kitchen and we have purchased several small gadgets to make the food preparation easier, not the least of which is a VitaMix. I love to cook and I love to make a good healthful dinner. I gauge my day by wether I can accomplish this. Some days, it means spending 20 min cutting the vegetables in the morning, 15 min getting grains or beans ready at lunchtime, then putting it together at dinner time. I manage this maybe 2 to 3 times a week. That makes me happy.
Not leaving the house today. I'd rate the pain today at a 6. I did take an aspirin to see if it might help with the sick feeling in my muscles - it did not. I have Neurontin that did help me for the 3 or 4 weeks I took it, but after strange hives and facial swelling, my doc agreed maybe it's not right for me. She did say I can try it again and see how it goes. I might because it did help the burning in my legs, feet, and fingers. It was awfully hard going off of something that was helping.
Not talking well right from the start today. More stammering because I can't find my words. I understand this - the words just don't connect, or I forget what I was saying. The gibberish hasn't started yet today, and this I just don't understand.
*************
This afternoon, I started crying out of nowhere. I was not sad, just participating in a group discussion about crocheting. About 5-10 minutes before this, I had pretty bad tremors - both arms and head. It came on suddenly and went away almost as quickly, lasting about three minutes. Since this episode, I cannot comprehend my crochet patterns again. I'd been working making holiday gifts all day - now every stitch looks like I never crocheted before and I'm not able to follow the pattern. Now I really could cry.
But, I don't get that nice, healthy burn of freshly worked muscles that I used to. I actually liked that kind of pain - makes you feel alive. Now, if I 'overwork' muscles (which is to say, barely work), they quiver with this very sick kind of feeling that edges on cramping helplessly. It's hard to explain the vague feelings and little wonder why it's so hard to diagnose, but YOU know it's just not right.
Some doctors tell me to keep going - other doctors tell me just rest - my PT therapist says just move at least 15 minutes a day, then rest.
From experience over the last five months (wow, have I been down THAT long? :( I have learned that I have a limited amount of energy. The energy bank is usually replenished after a mediocre night's sleep. I have 3-4 hours on an average day to do the things I want to do that involve walking, bending, or any kind of concentrated mind work, like paying bills. After this, whether I lie down, take a nap, pop all the vitamins I have, I start wearing down. If I stick to 15-30 minutes of activity during this time, I might actually be able to do another 15-30 minutes in the afternoon as long as I do something quiet pretty much the rest of the day.
Getting the food from the garden put away required no less than 2 hours of seriously difficult activity. I would do as much as possible sitting on a stool in the kitchen and we have purchased several small gadgets to make the food preparation easier, not the least of which is a VitaMix. I love to cook and I love to make a good healthful dinner. I gauge my day by wether I can accomplish this. Some days, it means spending 20 min cutting the vegetables in the morning, 15 min getting grains or beans ready at lunchtime, then putting it together at dinner time. I manage this maybe 2 to 3 times a week. That makes me happy.
Not leaving the house today. I'd rate the pain today at a 6. I did take an aspirin to see if it might help with the sick feeling in my muscles - it did not. I have Neurontin that did help me for the 3 or 4 weeks I took it, but after strange hives and facial swelling, my doc agreed maybe it's not right for me. She did say I can try it again and see how it goes. I might because it did help the burning in my legs, feet, and fingers. It was awfully hard going off of something that was helping.
Not talking well right from the start today. More stammering because I can't find my words. I understand this - the words just don't connect, or I forget what I was saying. The gibberish hasn't started yet today, and this I just don't understand.
*************
This afternoon, I started crying out of nowhere. I was not sad, just participating in a group discussion about crocheting. About 5-10 minutes before this, I had pretty bad tremors - both arms and head. It came on suddenly and went away almost as quickly, lasting about three minutes. Since this episode, I cannot comprehend my crochet patterns again. I'd been working making holiday gifts all day - now every stitch looks like I never crocheted before and I'm not able to follow the pattern. Now I really could cry.
Friday, September 28, 2012
Journal
So, my idea is to journal every day - anything significant or that bothers me or makes me happy.
Today is September 28, 2012
I took my copaxone shot today.
I had done a little research that showed copaxone to be just as effective (only 30% at best) taken every other day, as it is every day. I have intense burning pain from these shots, made worse by moving the area of the shot. So I stay put - for at least 20-30 minutes and try to think about something else. I am much happier doing this every other day. Besides, I'm not convinced I have MS, and neither is the neuro at Hopkins - so if this stuff is doing any damage, at least I can hopefully cut that in half.
Today was a PT day and evaluation.
I have been pushed pretty hard in PT the last several weeks. Today was session 14 of 30. I've found that I need to rest - seriously cannot walk hardly at all - after these sessions. Otherwise, my leg collapses. My therapist just nods as I explain this to her stating, we are working very hard and your legs are very weak, you must rest. So, okay - two days a week - I'm on the couch all day after a 45 minute to 1 hour workout that consists of very small movements to strengthen my legs and core. Thank goodness I can crochet.
Ah - I'm making holiday gifts. I can be happy with this - but not the spread of my ass from all the sitting :( The first month or two after this attack (May, June) I could not crochet - my fingers couldn't remember how to do it at first - then became so tired, all I could do was make the beginning chain - trying to do anymore resulted in an absolute mess.
I had a nap already, right after PT and likely will need another. I can't even begin to explain what this fatigue is like. Trying to ignore or push past it is futile - that is when the legs stop working, the fingers stop working, and the mind stops working.
I've already started talking gibberish today. It is so frustrating. I am trying to tell my husband our daughter just texted us a message, and all that is coming out is goladomatmilahahadodaaaaaasotogalamatusu - very fast - long strings of - what the hell did she just say? Every time I open my mouth - there it is - I don't know what I'm saying, but it's not what I'm thinking. I can write - I can type - I can't talk.
Today is September 28, 2012
I took my copaxone shot today.
I had done a little research that showed copaxone to be just as effective (only 30% at best) taken every other day, as it is every day. I have intense burning pain from these shots, made worse by moving the area of the shot. So I stay put - for at least 20-30 minutes and try to think about something else. I am much happier doing this every other day. Besides, I'm not convinced I have MS, and neither is the neuro at Hopkins - so if this stuff is doing any damage, at least I can hopefully cut that in half.
Today was a PT day and evaluation.
I have been pushed pretty hard in PT the last several weeks. Today was session 14 of 30. I've found that I need to rest - seriously cannot walk hardly at all - after these sessions. Otherwise, my leg collapses. My therapist just nods as I explain this to her stating, we are working very hard and your legs are very weak, you must rest. So, okay - two days a week - I'm on the couch all day after a 45 minute to 1 hour workout that consists of very small movements to strengthen my legs and core. Thank goodness I can crochet.
Ah - I'm making holiday gifts. I can be happy with this - but not the spread of my ass from all the sitting :( The first month or two after this attack (May, June) I could not crochet - my fingers couldn't remember how to do it at first - then became so tired, all I could do was make the beginning chain - trying to do anymore resulted in an absolute mess.
I had a nap already, right after PT and likely will need another. I can't even begin to explain what this fatigue is like. Trying to ignore or push past it is futile - that is when the legs stop working, the fingers stop working, and the mind stops working.
I've already started talking gibberish today. It is so frustrating. I am trying to tell my husband our daughter just texted us a message, and all that is coming out is goladomatmilahahadodaaaaaasotogalamatusu - very fast - long strings of - what the hell did she just say? Every time I open my mouth - there it is - I don't know what I'm saying, but it's not what I'm thinking. I can write - I can type - I can't talk.
So here I am
I went through a very short period where I believed I was getting better. I went through several weeks believing I had MS and trying to adjust. Then something occurred to me.
How could I be having these symptoms for 12 years - and it be MS - and have NO LESIONS? Sure, you can diagnose MS without lesions, but aren't you supposed to keep looking for them? I've had MRI of my brain, C-Spine, and T-Spine - no lesions.
Oddly enough, I do have chiari malformation, but it is not serious and likely not the cause of most of my symptoms.
The pain has been fairly constant for several years - burning down both legs and in my feet, especially if I do anything too active (like gardening). Pain in my fingers, including this deep burn that I swear is THE worst pain I've ever felt (and I did give birth twice) when I hit my fingers against something just the right way. Pain across my shoulders, back, and in my chest from tight muscles, also my legs and feet cramp.
In July, I began walking circles to the right. I'll get up and begin to walk (hobble) and end up going in about two circles to the right before I realize I'm walking in a circle - then I try to stop myself from walking in a circle. Hopefully, before I hit 10 circles, hubby will have come by and stopped me. It takes a serious concerted effort and an arm, or my cane, to walk straight.
Ah, the cane. At my last neuro appt, my husband says to the neurologist on his way out the door - wouldn't physical therapy maybe be helpful. Neuro wrote a script and a few weeks later, physical therapy. My therapist stated I need to keep the cane with me - balance is a real issue - and may need a wheelchair from time to time. I don't have a wheelchair, or a house suited to using one.
Back in May, I had some difficulty talking - speech was slow and chunky. That seemed to clear up. In August, this problem came back - much worse. Only this time, it's not just slow speaking - it feels like some entirely different language. I can run on for several minutes before I realize what I'm saying is absolute nonsense to me and every one else in the room - except the dogs - somehow they still understand me.
Several calls throughout July and August to make an appointment with my neuro got the same result - his schedule is locked and we can't make appointments - try in two or three weeks.
It probably isn't hard to imagine my frustration. In late July, I went down to the MS Center at Hopkins in Baltimore. I really like the neurologist there. He seems to think I don't have MS, but Sjogren's syndrome. I asked should I be taking this immunomodulator - Copaxone - if I don't have MS? He said sure, keep taking it ? (BTW, Copaxone costs about $4,300 per month, it is given by injection, and shown to reduce relapse of Relapsing Remitting MS by 30% - it also causes a lot of pain, and skin problems and possible necrosis)
So, I have been through blood tests, MRI, eye tests, and Monday I go for a lip biopsy to see if I have Sjogren's disease. I don't see the neuro at Hopkins again until November.
I saw my family doctor last week. She completed the paperwork that's been sent to my neuro for the last three months that he never sent back. Thank goodness my measly disability check will keep coming, and I can keep our health coverage a little longer. She said I need to find another neuro - yea, ya think? I asked the neuro at Hopkins, but understandably, he can't take my care if he doesn't diagnose me with MS. So, I guess I am on a search for a local neuro.
How could I be having these symptoms for 12 years - and it be MS - and have NO LESIONS? Sure, you can diagnose MS without lesions, but aren't you supposed to keep looking for them? I've had MRI of my brain, C-Spine, and T-Spine - no lesions.
Oddly enough, I do have chiari malformation, but it is not serious and likely not the cause of most of my symptoms.
The pain has been fairly constant for several years - burning down both legs and in my feet, especially if I do anything too active (like gardening). Pain in my fingers, including this deep burn that I swear is THE worst pain I've ever felt (and I did give birth twice) when I hit my fingers against something just the right way. Pain across my shoulders, back, and in my chest from tight muscles, also my legs and feet cramp.
In July, I began walking circles to the right. I'll get up and begin to walk (hobble) and end up going in about two circles to the right before I realize I'm walking in a circle - then I try to stop myself from walking in a circle. Hopefully, before I hit 10 circles, hubby will have come by and stopped me. It takes a serious concerted effort and an arm, or my cane, to walk straight.
Ah, the cane. At my last neuro appt, my husband says to the neurologist on his way out the door - wouldn't physical therapy maybe be helpful. Neuro wrote a script and a few weeks later, physical therapy. My therapist stated I need to keep the cane with me - balance is a real issue - and may need a wheelchair from time to time. I don't have a wheelchair, or a house suited to using one.
Back in May, I had some difficulty talking - speech was slow and chunky. That seemed to clear up. In August, this problem came back - much worse. Only this time, it's not just slow speaking - it feels like some entirely different language. I can run on for several minutes before I realize what I'm saying is absolute nonsense to me and every one else in the room - except the dogs - somehow they still understand me.
Several calls throughout July and August to make an appointment with my neuro got the same result - his schedule is locked and we can't make appointments - try in two or three weeks.
It probably isn't hard to imagine my frustration. In late July, I went down to the MS Center at Hopkins in Baltimore. I really like the neurologist there. He seems to think I don't have MS, but Sjogren's syndrome. I asked should I be taking this immunomodulator - Copaxone - if I don't have MS? He said sure, keep taking it ? (BTW, Copaxone costs about $4,300 per month, it is given by injection, and shown to reduce relapse of Relapsing Remitting MS by 30% - it also causes a lot of pain, and skin problems and possible necrosis)
So, I have been through blood tests, MRI, eye tests, and Monday I go for a lip biopsy to see if I have Sjogren's disease. I don't see the neuro at Hopkins again until November.
I saw my family doctor last week. She completed the paperwork that's been sent to my neuro for the last three months that he never sent back. Thank goodness my measly disability check will keep coming, and I can keep our health coverage a little longer. She said I need to find another neuro - yea, ya think? I asked the neuro at Hopkins, but understandably, he can't take my care if he doesn't diagnose me with MS. So, I guess I am on a search for a local neuro.
stress
In early April, a bit of an income tax return in hand, we decided to finally renovate one room of our small house. It was a real throwback to the 70's - green vinyl floor, dark heavy wood paneling, one-pane small wooden windows. We contracted to have three, slightly bigger, vinyl replacement windows installed and, as part of the contract, agreed to have the walls down to studs. We wanted to drywall the room and put in new insulation - a new floor - we couldn't wait! We had ideas for expanding the renovation to completely finish the first floor - luckily, we hadn't torn it all apart.
When this 'attack' hit me and knocked me out of work, this room, which is technically almost half the square footage of our entire home, was studs. I'm writing this from a room in studs, with some new insulation, a 70's green vinyl floor, three beautiful new windows, and drywall on part of the ceiling.
My sweetheart has suffered from scleroderma for over 20 years. I have been the one with the job, the benefits - now I can't work and can't do much to help on the house. The going is very slow. The last several weeks, he is suffering generalized weakness more than usual - and I'm really afraid.
We live on a small homestead we spent 12 years building. We grow much of our own food: vegetables, fruits, nuts, eggs. I am vegetarian, eating vegan much of the time. Hubby eats mostly vegetarian, and some meat.
We have three German Shepherd dogs who keep us pretty busy - we adore them :)
All of this is what we loved. It is now a sincere struggle to keep it going.
When this 'attack' hit me and knocked me out of work, this room, which is technically almost half the square footage of our entire home, was studs. I'm writing this from a room in studs, with some new insulation, a 70's green vinyl floor, three beautiful new windows, and drywall on part of the ceiling.
My sweetheart has suffered from scleroderma for over 20 years. I have been the one with the job, the benefits - now I can't work and can't do much to help on the house. The going is very slow. The last several weeks, he is suffering generalized weakness more than usual - and I'm really afraid.
We live on a small homestead we spent 12 years building. We grow much of our own food: vegetables, fruits, nuts, eggs. I am vegetarian, eating vegan much of the time. Hubby eats mostly vegetarian, and some meat.
We have three German Shepherd dogs who keep us pretty busy - we adore them :)
All of this is what we loved. It is now a sincere struggle to keep it going.
The diagnosis
So, now we're in June of 2012. I'd been sent post haste to Neurology. Needless to say, I did not get better or get back to work and was put on FMLA through the end of June - I was SURE I'd be back by then.
After thousands of dollars worth of blood tests, MRI's that showed NO LESIONS, and a Lumbar Puncture (that's Spinal Tap - and not the rock band - for those my age) showing elevated proteins, high iGf and O-banding (I am trying to obtain a copy of this so I have the specifics) - I was diagnosed with Multiple Sclerosis on June 21, 2012.
That appt went something like this - I need to have another damned paper filled out for the insurance (it was explained to me that on June 30, my FMLA needed to be rolled over to post-FMLA short term disability). I made an emergency appt to get the paper filled out and sent in on time. This neurologist refused to ever do a form without an app
ointment, explaining he wanted to 'stick it to the insurance company.' I hardly think that's the case since I am the one having to get in there for an appointment and pay the copay, but okay - whatever I have to do to be able to keep my house and health insurance a little longer.
In the midst of completing this form, he says to me - oh, your LP came back with elevated blah blah (the things I don't remember entirely and need for the copy), which is positive for MS. I'm saying, the insurance company wants you to include your tests and findings here. He writes seven medications on a script and hands it to me - says, this one costs this much, this one that much, blah blah. Pick one.
I ask if I can research these first. He says I can certainly have the week. I'm not a person who takes medication very often. I am a traditional herbalist and treat basic illness with herbs. The antibiotic I took for pneumonia was the first allopathic medication I'd taken in likely 10 years.
It wasn't until my darling husband and I were walking back to the car that I even realized he had diagnosed me with MS. I cried all the way to the car.
I spent the next week learning that the list was comprised of drugs for primary MS, and for secondary MS - doesn't he even know what I have? He didn't tell me (and never has) is it RRMS? PPMS? SPMS? What do I have?
On June 28, I had another form, and an appointment. While he filled out the form, I completed the Copaxone application. He informed me it would take 3-9 months for the Copaxone to 'work' and I should follow up with him in 3 months. I didn't even know what 'working' was, since all the research I'd done basically said it wasn't going to help me with symptoms, but might delay the next relapse/attack.
I'd waited 2 and a half hours in the waiting room and patient room to see my neurologist on this day. He was so hurried through the appointment, I never even got to ask what kind of MS do I have? When I got to the check out desk, they told me his schedule is locked and they cannot make appointments for him. They said they would call me.
After thousands of dollars worth of blood tests, MRI's that showed NO LESIONS, and a Lumbar Puncture (that's Spinal Tap - and not the rock band - for those my age) showing elevated proteins, high iGf and O-banding (I am trying to obtain a copy of this so I have the specifics) - I was diagnosed with Multiple Sclerosis on June 21, 2012.
That appt went something like this - I need to have another damned paper filled out for the insurance (it was explained to me that on June 30, my FMLA needed to be rolled over to post-FMLA short term disability). I made an emergency appt to get the paper filled out and sent in on time. This neurologist refused to ever do a form without an app
ointment, explaining he wanted to 'stick it to the insurance company.' I hardly think that's the case since I am the one having to get in there for an appointment and pay the copay, but okay - whatever I have to do to be able to keep my house and health insurance a little longer.
In the midst of completing this form, he says to me - oh, your LP came back with elevated blah blah (the things I don't remember entirely and need for the copy), which is positive for MS. I'm saying, the insurance company wants you to include your tests and findings here. He writes seven medications on a script and hands it to me - says, this one costs this much, this one that much, blah blah. Pick one.
I ask if I can research these first. He says I can certainly have the week. I'm not a person who takes medication very often. I am a traditional herbalist and treat basic illness with herbs. The antibiotic I took for pneumonia was the first allopathic medication I'd taken in likely 10 years.
It wasn't until my darling husband and I were walking back to the car that I even realized he had diagnosed me with MS. I cried all the way to the car.
I spent the next week learning that the list was comprised of drugs for primary MS, and for secondary MS - doesn't he even know what I have? He didn't tell me (and never has) is it RRMS? PPMS? SPMS? What do I have?
On June 28, I had another form, and an appointment. While he filled out the form, I completed the Copaxone application. He informed me it would take 3-9 months for the Copaxone to 'work' and I should follow up with him in 3 months. I didn't even know what 'working' was, since all the research I'd done basically said it wasn't going to help me with symptoms, but might delay the next relapse/attack.
I'd waited 2 and a half hours in the waiting room and patient room to see my neurologist on this day. He was so hurried through the appointment, I never even got to ask what kind of MS do I have? When I got to the check out desk, they told me his schedule is locked and they cannot make appointments for him. They said they would call me.
Hello out there
I am in the midst of a nightmare that I know so many others must face. I've decided the only way to find answers is to start journaling everything - everything. So, here goes...
On April 24, 2012, I was not feeling so well. Extremely fatigued, feeling sort of like I was trying to walk through quicksand, with pain in my legs and general confusion and weakness. None of this was really new to me. I'd dealt with these symptoms on and off for about 12 years, usually lasting for a few days to a couple weeks, then I would feel better. This time was just a little different, though. It was heavy - not sure how else to describe it - just worse than ever before.
Somehow on April 24, I managed to drive (very, very slowly) to work. I put a call in to my doctor because I had just gone through a bout of illness that went from sinusitis to bronchitis to pneumonia. I was working 10 -12 hour days running a very busy office on my own. My family doctor called me back and said she wanted me in the Emergency Room right away. She said I wasn't talking correctly.
In the ER, a doctor came in after hours of basically nothing being done other than a blood and urine test, and essentially treated me like a dumb ass - didn't I KNOW I had MS?
Well, no - I didn't know, and still didn't know. I'd never been diagnosed with MS as far as I knew. And, if I was, it would have been nice if someone told me.
I was put on FMLA - told my boss I was sure I'd be back in a week or so, by the beginning of May. This always worked itself out with rest. So, rest I did.
On April 24, 2012, I was not feeling so well. Extremely fatigued, feeling sort of like I was trying to walk through quicksand, with pain in my legs and general confusion and weakness. None of this was really new to me. I'd dealt with these symptoms on and off for about 12 years, usually lasting for a few days to a couple weeks, then I would feel better. This time was just a little different, though. It was heavy - not sure how else to describe it - just worse than ever before.
Somehow on April 24, I managed to drive (very, very slowly) to work. I put a call in to my doctor because I had just gone through a bout of illness that went from sinusitis to bronchitis to pneumonia. I was working 10 -12 hour days running a very busy office on my own. My family doctor called me back and said she wanted me in the Emergency Room right away. She said I wasn't talking correctly.
In the ER, a doctor came in after hours of basically nothing being done other than a blood and urine test, and essentially treated me like a dumb ass - didn't I KNOW I had MS?
Well, no - I didn't know, and still didn't know. I'd never been diagnosed with MS as far as I knew. And, if I was, it would have been nice if someone told me.
I was put on FMLA - told my boss I was sure I'd be back in a week or so, by the beginning of May. This always worked itself out with rest. So, rest I did.
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