Val: Prayers and Hugs Sent

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LisaQ.

Well-known member
Oh dear, Val...
Hang in there. Hugs and prayers are heading your way.

I was actually dx'ed with one of the bad diseases, treated for it, and it turns out that I don't have it. I was bounced around between different specialists, some of whom kept insisting that they thought I had *S, until finally I had to go to the top *S specialist in my area to be told in fact that I don't have *S.

I'm only mentioning this because the rheumie's suspicions don't mean a thing until you receive a formal diagnosis from a qualified specialist after further testing. You don't have to accept this, it is just one person's opinion that doesn't happen to agree with another.

I know you are on an emotional roller-coaster ride, and a bumpy one at that.

We're here for you whenever you need us...just keep in touch and we will be here to lift you up.

Sue
 
Val,

Right after my twitches started I went to my GP. I was able to get in to see a neuro pretty quickly after my GP visit. As the neuro was doing his exam on me I said "I don't know what weakness your GP is talking about. I can't find anything!" Same thing with my patellar reflexes. The neuro said "I can't find anything wrong with you." Both of my in-laws are doctors and just laughed saying my GP probably didn't know what he was doing. Trust the experts on this matter!

Swift_TaySwift20
 
Thanks alot guys. I'm trying to remain calm but of course that's challenging. Unless I end up in emerg from panic, I don't think I'll post too much until early Feb when all my tests should be back. It's so weird as
I don't 'feel' like I have that disease. No noticeable weakness in in legs or anywhere to me. It's the atrophy thing that is definately the most disturbing. I can see it too and I know the neuro looked at my hands for about .5 seconds but I really felt she was too quick and brushing me off
because she didn't want to alarm me without conclusive tests. How could she put in her report 'no atrophy' if there is some? unless she just omits any statement regarding that. I read that even peripheral neuropathies can even cause wasting(?) Anyone know of any other possibilities that aren't that disease? If not I'll keep you posted.
Val
 
Aren't brisk reflexes what they look for in ALS?

Heck it's hard enough to even get two neuros to agree sometimes. I definitely have atrophy in my foot from an old injury... i once had a neuro tell me i "definitely" had tongue atrophy and wouldn't offer any other explanation than ALS but that was five years ago and I haven't changed a bit. I have almost absent reflexes in my knees and she said also that is a sign in "a variant" of ALS when I asked whether they aren't supposed to be brisk. Saw my regular nuero a week later (hint: second and third opinions aren't always good things) and he looked at my tongue and said it looked fine, and just shook his head when I told him what she had said about reflexes. I went with his take on it all because she said he was more qualified than she was, being certified in EMG and teaching at a university hospital.

Have you had an EMG? Frankly I just don't think your post sounds alarming. One of my neuros said with ALS you can expect month-to-month changes. Have you had that?

I'd not worry about it, go back to the neuro and see what he/she says.
 
Val – This was the very first link that came up for “fibromyalgia symptoms”



Anyway, you said your legs felt fine to you—and they’re your legs, so you should know best.
 
Thanks Bill,
That's a great link. Too bad I couldn't find it at the time I was surfing a year ago...

So, Val-there you have it.

Sue
 

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