I followed up with my neurologist yesterday. She doesn't say much, so it's hard to get a read on everything. The guy who did my NCV did both of my thumbs this time. The decline in CMAP was not as bad as my foot from last time. I think I heard him mumble something like 4 or 5% when he was writing his notes. Does anyone know the limits they look for? Also, is it possible for certain muscles to have it and others to not? I feel like my issues are more in the longer muscles, like my quads. Blood work for antibodies is not in yet.

The neurologist upped my neurontin and put me on mestinon. I start off slow on the mestinon. Does it take long to notice a difference?

Additionally, what is the NCV findings in LEMS?

I should add, my neurologist has now EMG'd pretty much everywhere. The face needles hurt real bad. Not sure what she was looking for there, but the needle in your cheek is no fun. She said no signs of MND, which was my initial fear that I am having trouble forgetting about. I started seeing a counselor who does cognitive behavioral therapy in order for this not to turn into a hypochondriac type situation.

Why didn't they do the RNS on the EDC (extensor digitorum communis muscle?! AKA the forearm. That's what they usually do.

http://neuromuscular.wustl.edu/mtime/mgdx.html

http://www.ncbi.nlm.nih.gov/pubmed/11165533

Get a copy of all of your test results!

MG does affect the proximal muscles more. I don't know why your feet showed positive results.

I think you need to see a neuromuscular specialist. Did the blood tests come back?

Why do you need to see a counselor? Do YOU think you're a hypochondriac? I don't. It seems to me that they wouldn't say that you had MG if you didn't. What's going on here?!

Annie

The guy who does the NCV does them all over my area, so I think he's pretty respected. When he did my foot, I actually think it was testing extensor digitorum longus. I just said foot because to fatigue it, I had to push my foot up against his hand. No blood tests yet. Probably won't be back until next week. I also had my b12 retested and they're doing intrinsic factor this time. My doctor thinks its suspect that my b12 was so low with how much red bull I was drinking. I couldn't get in to the MG specialist here, nor did he respond to an email.

I was not previously a hypochondriac, but the initial onset of weakness and muscle twitching led me to google which led me to ALS. Despite negative EMG's, I've had a hard time letting go of this fear, so I signed up for counseling on my own.

I can understand the ALS fear. A friend of mine died of ALS.

Do you mind saying where the MG expert was? Maybe someone here knows of another one who isn't so unresponsive!

It's always good to talk to someone about facing down any disease. I've done it. Lots of people do. But that does not equate to your being a hypochondriac. There's obviously something going on with you that is very real.

It's important that they know for sure what is going on. It would be pretty awful if you were diagnosed with one thing but it ended up being something else. I really hope you can find an expert to help you!

Annie

Pittsburgh area.

I have the urge to ask about your friends als symptoms, but I am not supposed to. I know that emg changes are present well before one feels different.