Need some advice

[mlcampbell]

I posted this earlier but it didn't show up. Maybe because I'm a new member? Anyway, here is an abbreviated version of my last post:

April 2009:
Had profuse, body wide twitching. Googled twitching and everyone knows what came up.

Within a few months I noticed:
Weakness and atrophy in my right thigh
The right side of my tongue got smaller.

Within a 6 months I noticed:
Weakness and atrophy in my right tricep
the right side of my lips seemed a bit thinner.

By this time I was thoroughly scared and got an appointment with a neuro at the VA. He confirmed the slight atrophy and something about reflexes. He scheduled an EMG a couple months later. I never went. I found it easier to live with it if I wasn't absolutely sure what it was.

Now fast forward to present time, 4 years later. I have definitive atrophy in right thigh, tricep and tongue. I have not had it progress to the point that I experience trouble walking or lifting. I am definitely weaker but it seems to have gotten to a point and stopped. I have noticed the same feeling happen in right abdomen and pelvis area.

The new additions are I am developing outbreaks of fever, joint (hand and feet) swelling, as well as what looks like a vasculitis rash on my legs and thighs. This will last a couple days and go away. There is no predicting these outbreaks and they come and go.

Has anyone else experienced this? I know I need to go see a dr but I'm terrified I'll find out it's ALS. I wouldn't be afraid if it wasn't for the tongue involvement. That seems to be a pretty significant sign of ALS.

I hope that I haven't offended anyone and I would appreciate any help you may provide.
Thank you and God bless.

 

[Nikki J]

Please go back to the doctor. The fever rash swelling and 4 plus years of symptoms seem to me to point away from ALS. Maybe something autoimmune ( and treatable?) but until you go and have an exam and some tests no one can know. Call today if the office is still open otherwise first thing in the morning. Please?

 

[vickim]

I would go to the dr if I were you. It could be lymes disease or any number of things. I know lymes can attack the joints as well as the heart if left untreated. No one likes to go to the dr and are afraid of the answers they may get, but I think you are scared enough to go. We can't answer your questions.

 

[Tiber2011]

I'm going with Lyme disease or Lupus on your case.

Lyme isn't the easiest to diagnose. But, once they pin it down - you'll be feeling great with antibiotics.

Lupus is very manageable. Wish you had gotten the EMG. I totally freak out if I don't know what something is.

 

[mlcampbell]

Thank you all for your reply. I know that I need to go to the Dr and I have put in a call to the VA for an appointment. It's really the tongue involvement that has me worried. Does a dirty EMG definitely mean ALS or are there other things it could mean?

Thank you all for your help.

 

[paul71]

There's a zillion types of "dirty" when it comes to EMGs. There can be nerve entrapments, spine issues, or muscular problems as opposed to neurological.

Even the most knowledgable people here on this forum are kind of guessing. We didn't attend medical school. Even some neurologists are not board certified.

I'm not being sarcastic - but if you have specific EMG questions, you should ask your neurologist. Every case is different.