diagnosis

[edwards5257]

I went to St. Louis Wash U Center for Advanced Med last week. VERY good neuro exam by resident and chief of staff, who specializes in ALS part. BOTH said exam - both checked me over - did not indicate ALS. Why then am I on here again?! God only knows. We talked about the fact some are not diagnosed for six months, one year, etc. You get my point! Both said they understood my fears. I had another extensive EMG/NCS (even on arms this time!) and an ultrasound of my nerves and muscles. ALSO, MUCH blood work was done again. Will call back in three weeks for results. I was very pleased with the exams and testing. My diagnosis was small fiber neuropathy. I wished I had asked more about this disease but didn't-ugh. I have searched on the web, but can find out very little on muscle weakness for this condition. And they know of my weakness in my neck, mouth, swallowing, etc. But my clinical exam showed all strength tests were very good. And I CAN still eat major foods. Without choking. But when I seemingly drooled last night (a little from my left side of my mouth, has happened before) it scared me of course. Anyway, sorry to bother you all, but giving an update. On an ALS site, when I have been told no ALS. THANK YOU all! Any comments would be appreciated. Yes, I do see a counselor for my anxiety.

 

[notme]

You have a diagnosis--a neuropathy. Are they doing anything to treat it?

 

[notme]

grr neu ropa thy is the answer they gave you. No ALS. congrats

No reason to think that your answer will change.
Last answer went to mod land

 

[edwards5257]

THANK YOU not me!

 

[st123]

Did you expect the doctors that diagnosed you to treat you? I'm not being sarcastic - just wondering. Seems like your next step should be to seek answers and ongoing treatment from a medical professional for small fiber neuropathy. Good luck!

 

[Alyoop]

I can understand its frustrateing, but when you break it all down and think about it carefully, then it makes sense.

Your tests must have pointed to small fibre neuropathy. You are correct, in SFN there is no weakness, its just sensory signs and symptoms.
Your examination has shown that you DO NOT HAVE weakness. It would be very easy to determine weakness of your neck, face etc during a clinical examination. The weakness is pure and simply absent. SO you do not have ALS or weakness, only perceived weakness.

Relax and try to drop your obsession with ALS.

 

[edwards5257]

THANK YOU alleyoop for your insight and I am happy to hear from you, yes obsessing isn't a good thing about ALS and my exam was very thorough by TWO neurologists-the resident and chief of staff. ALSO, testing done. Again thank you!