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.
Monday, November 26, 2012
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.
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