hoping to be wrong

[merrs]

I requested them. I pick them up on monday. I don't understand what you mean by "makes me think you don't know?" At this point the only diagnosis is muscle weakness and shortness of breath(also hypermobility, autonomic dysfunction, anterolisthesis aand radiculopathy but these are older).

 

[Nikki J]

That you don't know what it said to cause the pcp to recommend ssdi. Good you are getting the notes

 

[merrs]

I don't know what it said and my pcp said it was confusing. I had asked for copied at the end of neuro visit but he stated that they wouldn't be ready for a few days but I mentioned my appointment with pcp on fridays I guess he made sure they were available to him but I don't know for sure. Thanks for your response.I do know that the last time I saw my pcp was 4 months ago for backpain and leg troubles and now I can barely walk and my hands are having issues.

 

[merrs]

Neuro notes confirms distal weakness in upper and lower extremities.(all figures in these areas in the 3s) some weakness proximal lower extremities(4s). Scissoring gait with right leg steppage. When he told me to flex my big toe up it moved downward slightly instead(I can't make heads or tails of that). Positive for tremor but no clonus). Full strenghth tongue. Reflexes look ok according to notes but he questioned the hyperreflex in my knee reflexes during exam(asked if i had always been hypereflexive there). Anyway sooo I wait for EMG. My main solace is that the weakness is now bilateral and so maybe it must be something else. If anyone has any suggestions as to an "else" I am most open. I have looked upthe ones in the stickies and none of them quite fit....though I have friends that insist it could be chiari malformation or tethered cord however sensation is completely intact. Thanks everyone.

 

[merrs]

Well....very nervous but glad too. The neurology office called me last night and got my EMG sceduled for tomorrow morning. I hope to have an answer . Thanks everyone. I will let you know.

 

[soonerwife]

Good luck merrs!

 

[merrs]

Thank you all for the support. EMG results point to myopathy....something in the calcium/sodium/potassium channels most likely. Just wanted to let you all know.
Merrs

 

[ShiftKicker]

Thanks for the update. I sincerely hope your doctors will now be able to provide more info and help with management of your symptoms. While it's not totally a benign and simple diagnosis, I'm hoping there's some relief in knowing.

Absolute best wishes to you.

Fiona

 

[Nikki J]

Thank you for letting us know. It is very helpful as you illustrate very well the point we often try to make that one can have clinical weakness, atrophy and twitches and have something other than ALS. Wishing you the best as you address this issue