back to the als diagnosed, again!

[NotALS!]

Ok, this is really getting ridiculous. I've had lyme symptoms for 10 years but never tested positive for anything. In 2009, my shoulder became weak and atrophied. The first neuro didn't give me any explantion but asked me back in a year.

A year later, the atrophy had spread to my other shoulder and he diagnosed me with ALS. I freaked and ran to 3 different lyme doctors. In the past 3 years, I've tried every med thrown at me and had some success but overall I am definately getting weaker.

I went to 2 other neuros while on abx and they did EMGs and said I didn't have ALS. Now I'm off abx due to c.diff and the current neuro say I have ALS again!

I shake like crazy when I'm not on abx but my body can't tolerate them anymore. Ceftriaxone was the best, I was on that for 9 months until a staff infection in the picc line.

I'm so worn out from all of these conflicting opinions. I don't know where to turn next.

 

[bob_s]

Sorry you're having trouble getting a solid diagnosis, and I wish for you that you don't have ALS.

What were the results of the EMGs?

You said you didn't test positive for Lyme disease. Why did you go through an extended course of abx? Did your Lyme expert do an "antibiotic challenge" and retest?

Bob

 

[notme]

Good Lord....no positive Lyme test and you've done that much antibiotic? WHY?

Stay away from the Lyme doctors and see a qualified neuromuscular specialist.

C-diff can be deadly. Did they install the PIC for the antibiotics?
Do your EMG and exam suggest ALS to a neuromuscular ALS doctor? It's a horrible diagnosis, to be sure, but you're only harming yourself if you keep letting these LL doctors get you to destroy your body with unnecessary antibiotics.

Best wishes to you!