my story so far

Hi,

Still here and still no def. diagnosed. Sorry to bother you all again with this but I just need to share this :-?
I'm trying to give myself a little hope after reading a story here from 'Paradox' who also got the possible als label after emg and clinical but later was cleared from it.

However , my story is different and really weird things are going on. Also some other patients had shoulder/arm pain as their onset.

I'm going to see the neuro again in 2 weeks to discuss the emg results because he said it was abnormal but I don't have the actual results.

What happened so far:
- widespread twitching for 2 years (diagnosed BFS by prof in MND in Oct 2007 after clean EMG - only fasics). In those 2 years I went the the MND neuro approx. 5 times to have a clinical. Everytime he said it was fine and would be BFS.

- Sept 09: severe left shoulder pain with a lot of upper back facics.
---> Neuro said possibility of MND (sept 09)
---> GP told me to get some massages and some spine manupulation by physiotherapist . I went to him for shoulder pain but after a few sessions I got severe upper back pain, I still have it. The pain is really ubearable and to take pain killers for it.

Is it possible that the severe upper back pain is there because of some weakness in the back/shoulder (that I don't notice yet) and muscles react on this because of the massages? (don't know how to explain it)

- only 'slight' weakness I notice is in my left hand when typing. But ofcourse I'm testing my left hand more now to see if there is noticeable weakness (but I'm righthanded)

Clincal symptoms seen on app:
Hoffman (but other neuro said it happens more in young healthy people)
Few beats of clonus (someone said a few beats is considered normal)
brisk reflexes (2 years ago they said with my body type, young age and nerveous type it's normal)

Another thing that maybe could be an ALS symptom is that last week I have ran into some doorways at work. Never did that before. But now I read other experienced this as well, so this is also a symptom?

Dropping things : I drop things when I try to grab them but not when I hold them (but I always have been a little clumsy)


SO; widespread twitching for 2 years (24/7 calves) and a lot of left upper back twitching since sept 2009 - inside vibrations - left shoulder pain - severe upper back pain - brisk reflexes - hofmann - few beats of clonus - slight abnormal left hand - running into things
--> What do you guys think? Is this very likely to be ALS? Other possibilities?

Thank you
Bart

Bart,
I can't speak to most of what you have written but I can comment on you thinking you are experiencing weakness in your left hand. If you are looking for weakness you are apt to find it. I'm not saying its not there because it sure could be, but I know I found myself thinking I had weakness when I was looking for it. When I stopped looking for it, like magic it went away.


I really hope you get some definitive answers soon and that you do not have ALS.

Are you on any medications? I have been a little wobbly in my balance since starting Xanax for another symptom. Apparently several of these kinds of drugs can have side effects affecting balance somewhat, that could make you bump into things more. As far as your shoulder pain, it doesn't sound too likely that you would have weakness in your back muscles that you wouldn't have noticed. That would also imply trunk onset which is pretty rare in ALS.

Maybe your physiotherapist didn't do the right therapy and they did something to your back. Different therapists often use very different treatments, you might try another one and see if they can help with the pain there.

Bart, I think some your symptoms are clearly related to anxiety. I already replied to you in another thread; you need to see a good neuromuscular MD and get an EMG.
I agree with Hal, you might need to go back for PT. PT have so many modalities now days.
Good luck to you. I wish I can help you more, but you really need to see a qualified doctor in order to get a sound medical advice. Erica.