Mike is a 38yo, 6'4", 186 lb man who has been wheelchair-bound for four months with myoclonus. Three years ago symptoms began with mild dizziness on waking in the morning and very mild Parkinson-type tremors that resolved quickly. A tumor was discovered on the left side of his neck that was excised, but that had no effect on his symptoms. History is sketchy here, but symptoms have diminished and reccured twice over the last three years. In late-Jan '02, myoclonus and severe balance disturbance occurred with what seemed to be flu.Testing was negative for virtually everything - MRI, CT, blood chems, CBC, cardiac ultrasound - all within normal parameters with one or two mild variations (MCV, PLT, LYMPH). Carotid - velocities are 71 right, 57 left, patent and smooth. BP averages 90/60 and pulse at 50-60 normally. Orthostatic hypotension constantly exacerbates the ataxia and myoclonus. Complaints of room-spinning and whiting out type blindness. Lying on his left side produces intense symptoms (side where velocity is lower). Horizontal nystagmus as the only other (measurable)neurological sign. Confusion on changing posture along with proprioception disturbance and increased shaking. No known history of anoxia, trauma. The question, at this point is, could all of these symptoms be induced only by the hypotension? He sees a very busy neurologist who has not ordered SPECT, MRangiogram, cerebral oximetry or any other measure of his cerebral blood flow/perfusion. Should we insist on these tests? Started on butcher's broom and caffeine today. What else can we do?
His symptoms are concerning for a neurodegenerative syndrome. There is a condition called MSA or multisystem atrophy that is thought to be a parkinsonism (NOT parkinson's like Michael J Fox/Muhammad ALi, but in the family of parkinson's disease). This is characterized by profound orthostasis and autonomic dysfunction (bowel/bladder problems, swallowing difficulty), rigidity and other parkinsonian features like falling and gait instability, and cerebellar signs such as ataxia and nystagmus. It is a clinical diagnosis that cannot be made with a simple blood test or imaging study (most things will be normal). A careful history and exam are necessary.
A second possibility is Creuzfeldt Jakob disease which is a rapidly progressive dementia that can be accompanied by myoclonus. Other neurological deficits can be present also.
There are other diseases that this can represent depending on the whole clinical history and examination findings, but the symptoms you report here sound worrisome. Strongly consider a second opinion at a major clinical or academic center with a movment disorders section. Best of luck.
sorry that your friend has been feeling so poorly.
I have had many of the same things happening. It is frusturating when there is not a clear diagnosis and that many of these neurological disorders can take on the same symptoms. I have been tested for many many things and like the doctor says alot of them have no black and white testing it is just my last dr. visit that he mentioned OPCA. I have not had the tilt table testing. Like so much of my tests it will probably give not clear answers.
My b.p. flucuates but can go low like 73/41 and pulse like 41. That alone makes one dizzy and unclear thinking. The confusion and thinking difficutlies can be scary for my family.
I have had bouts of bad balance that do not come completely back.
Ataxia, swallow difficulties, speech troubles, nysagimus, vision problems. My doctor has not labeled them myoclonus but I get times when I have jerking, and truncal tremors.
There is much more that goes along too.
Just know that you are not alone even though this can all be very difficult to deal with. I have read also that many doctors will not give a definate diagnosis of MSA.
Hang in there and keep the faith!
I'm so sorry to hear that you experience such similar symptoms to Mike's. I can only imagine how frightening it must be. I wonder, after reading your post, if you are able to still be physically active most of the time. Does your BP fluctuate with your activity level? I encourage Mike to exercise as much as possible, but he is not able to do very much that would get his pulse moving. I believe strongly that if he could be more active, he could raise his pulse and BP and that might give him a little more ability. (His remissions seemed to have been linked to activity level in the past.) What is OPCA that you mentioned in your post? It seems I've read about it but can't recall what it is. I know it's an orthostatic problem.
Hey, Thanks for writing back again.
I have not been have a definite dignosis of anything yet because I do not fit in the right molds, so what else can be new!
The OPCA is one of the MSA that they catagorize. Sorry but I can not spell the whole name. As I have read about the different types they can over lap some and they used the 3 main labels depending on what area is more prominate.
As far as the b.p. and such I have not had any professional testing for it yet. He did mention to have a tilt table test done. But I have been monitoring it on my own for a few weeks ever since in the e.r. my b.p. was very high. There really isn't too much rhyme or reason to what happens although when ever I lay on my right side it drops. My breathing is very slowed also, my tempurature has a hard time regulating too. Although I haven't had the down to the bone chills lately. As far as exercise it all depends on the day and what I have done leading into then. It mostly consitsts of moving about the house and through the grocery store. I can get my pulse up to about 70+ (usually about 60)doing house workfor a 15 minute stretch and then get exausted and it is when I rest back that it takes a dive, I have taken it a few times that it was 45 and lower. I have bouts where for a few days at a time all I do is rest and mainly sleep. During those days my mind is way off and I have a very difficult time thinking. I get that freezing of movement and thinking like some of the sites read about. I am dizzy 24/7, my balance is difficult to keep. I have had p.t. a few times for 3 months at a time. Unfortunatly I do not see much if any improvement. Some days it seems to be to taxing when they up the difficulty some to where I think it does more harm than good.
I hope today is a good day for you and Mike,
take care and keep the faith!
AMO--have you had an MRI done?? I had he same syptomes as you and Mike--have I should say--and they have just found a huge disc prolapse in C5-C6 causing compression on my spinal cord. Just wondering if that is probably the reason for all these horrible feelings-if perhaps the vertabral vein is involved, and if you could be having the same problem. It has taken a year to diagnose me so far..
Goodgal, have you had any pain with your disc compression? Mike reports no pain anywhere (thank God!) but he does have some apparent damage in C4/C5 that showed up on MRI a couple of years ago. At the time, no one seemed to think much of it. He currently has a lump that I noticed near (I'm guessing) C6 or 7 that we're going to have his neurologist look at today. Until someone proves very clearly to me that Mike's condition is not related to some blood flow issue, I find it impossible to not be suspicious of it. It may not be the whole problem, but it is a huge contributing factor right now. AMO, thank you for your response, too. I'm happy to hear that you can be active. After watching Mike's deterioration, and I am in no position to be giving advice, but I would definitely encourage you to stay as active as you possibly can while your doctors figure out what is happening to you. I have suspected for a while that if Mike had been able to stay active, he would still be active, but he was so heavily drugged that I think the inactivity was very detrimental to his abilities.
It is always good to talk and have support, thanks you both.
I have had extensive testing. I have had i think 9 brain mri, two cervical mri, one mra, and a brain biopsy which was inconclusive except to say my cells are not right, (well duh! LOL) The c-spine mri did show some degenerating disk but nothing they feel is related to the troubles I have. I don't really have much pain either- THANK GOD! Mikesgirl, you talked something about him having "episodes" before and was he able to come back somewhat form them? About activity, there seems to be a fine line on what is the right level for me, before it overtaxes me and sends me crashing. I am very stubborn and don't take that I can not or should not do somethings very easily LOL. Since I have started to monitor my b.p. I wonder if all this dizziness is from that or from the nystagmus and how I see things. Or if it is not connecting in my brain.
Hang in there you guys and keep on having faith that there will be answers and the right treatments :)
Yes, Mike has had a couple of 'episodes' of this. He rejected a wheelchair that was prescribed for him a couple of years ago and insisted on doing things for himself. From what I have been told (I didn't know him at the time), he crawled everywhere and eventually forced himself to be upright and to walk again unaided. It's all very strange the way he was able to overcome this and it keeps me hopeful that he will be able to do it again, although he seems to feel that it's unlikely. This is why I am encouraging you to stay active. When Mike was sick before, he stayed active and was able to overcome it, but this time he has been bedridden and wheelchair-bound, and I blame a lot of his disability on that now. Had he not been so severely drugged, I suspect he could have maintained his strength better and maybe overcome this again.
We saw his neurologist today who completely rejected the idea that blood flow is involved, and I find it frustrating to have it dismissed offhandedly like that, but he seems very sincere in his desire to help Mike, so we will play along for a while before making a decision about looking elsewhere for help.
Yes the brain is a very strange thing! LOL It is amazing it can heal and find new pathways for doing things, and othertimes that just doesn't happen, go figure !
Has Mike had a tilt table test? I am wondering what it was like for him and what the results were since you mentioned it was when he was on his side, because that is what it does with me not the standing up lightheadness.
Thank you for the incouragment to stay active, like i said it is like walking a high wire trying to balance the energy used. When I have used too much I go crashing down.
I am sorry you didn't get more answers the other day for him. It seems alot of times that what it takes is by eliminating things.
Take care and keep the faith! Let me know if you wouldn't mind about how things go.
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