steve had muscle biopsy . they say have mitochondrial disease - explains weakness bits of trophy and emg - mito cocktail may help and exercise - - you might want to ask for biopsy too- not great but better to know
hi just wondering how you are and comparing notes
I have mild atrophy in feet, cant walk very far 15 mins
recently both hands look flat skin tight and weaker
emg shows polyphasic units long duration but only a few fasciulations.
I had slightly raised protein in spinal fluid and blocked evoked potentials in spine
all going on for 4 years
vey slowly progresses but never improves
mri clear just had biopsy - awaiting results
hows you have you got any more news
I think damaged spine but mri cant prove it
best wishes mags
My money remains on somethings autoimmune and it's most likely something non-specific . . . meaning . . . it doesn't have a name. Unfortunately you might be in a holding pattern to see if anything changes. What did the docs say about the findings in the SPECT?
Elevated protein is so non-specific and thus can be caused by so many different things. It being slightly probably means very little but it depends on how slightly elevated and what other signs and symptoms you are still having. It will also depend on whether it has changed over time. SPECT scans have been around for some time and are routinely used, so I would assume they are fairly reliable. I'm certainly no expert, though. What did you get scanned and what were the results?
I'm sorry, I didn't mean to be evasive. It isn't reminiscint of anything I've experienced. To be honest though, though I have had spasticity in spades, cramping has never been an issue I dealt much with or noticed. I haven't read any detailed accounts of what cramping feels like in MND either, so I don't have much book knowledge on the subject.
It does sound a lot like what I have heard my friends with cramps and tightness as part of their BFS say. If you have no UMN signs right now and don't develop mysterious joint damage in the future, you can probably safely assume it's benign.
The large MUP's will always be present. It's a sign of reinnervation and reinnervation causes rearrangement of the motor units (it makes them bigger . . . I can explain this in detail if you'd like) and it's the larger motor units that makes the MUP's bigger (MUP stands for motor unit potential). PSW's and fibs are only present when the muscle is denervated. Once it reinnervates, the PSW's and fibs disappear. Yes, you are correct: if you had MND, the PSW's and fibs would always be present . . . until of course the muscle is completely dead.
Hello again, Steve. Typically HSV affects the skin but it has also been known to affect other tissues. It is certainly a possibility. I was unaware that you tested positive for inflammatory markers, so some autoimmune condition is certainly a possibility as well (it might not have a name, by the way . . . just "something" autoimmune). It could be that your negative ANA test was because it wasn't done during a flare-up, so if you feel that your symptoms start to wax, then I would rush into the docs office to get a blood test at that time. It sounds like your physicians have been thorough, so I'm not sure what other test can be done. I wish I could be of more help but I think they're methodically making their way towards a diagnosis. Good luck with the antibiotics and write when you feel the need.
Hello Steve and my apologies for not getting to you sooner. I just read your thread and that is one heck of a story. To me, it sounds viral or bacterial . . . and the waxing and waning of signs and symptoms might simply be flare-ups that occur. A perfect example would be the herpes virus (I'm not saying you have herpes, by the way). From time to time people have a "herpes outbreak" and then the signs and symptoms appear for a week or so and then it clears-up shortly thereafter. That is what might be happening with you, with the exception that the virus or bacteria that is wreaking havoc is affecting things in your body (e.g. your nervous system and digestive system) that cause lingering effects and sometimes things that don't heal properly. That is simply a theory but one that makes sense given your story. Has anything like that been mentioned to you?
I have fasciculations mostly in my same left foot and same left calf. No weakness upon clinical examination from by my GP and normal reflexes. Thank You For Replying with your insight and knowledge and for sharing describing your Weakness with it.