UUUGGGGHHHHHHH!

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?

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.

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.

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 :(

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.

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.

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.

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.

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?

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....