Something weird is going on
 

I have something that is a little strange that is now happening and I need to know if anyone can answer a question I have.

Four months ago I had a relapse of MG after 4 years of drug induced remission so to speak. My MG symptoms include weakness of my arms and legs, breathing issues and my left eye is affected. I have never had any issues with swallowing, chewing or speaking. Under my neuros care, I increased my dosage of mestinon when I had my relapse but the last couple of days when I take my medication, about 1 hour later I have problems swallowing and my mouth feels very weird, kinda thick feeling if that makes any sense.

I have finally noticed a change in the weakness of my arms and legs. Meaning that it has gotten better not worse. ( I really hate to say that, because I don't want to jinx myself) I am taking my mestinon on a set scheduele whether I am weak or not and am wondering if that has something to do with these swallowing issues I am having shortly after taking the mestinon. I know that I still need to take it because I still have weakness, just not as constant as it was when I first relapsed.

I am going to see my Neuro tomorrow for a follow up appointment and was going to ask him about it but thought I would post my question here just to see if anyone has any idea as to what could be going on with me and this crazy body. My skin still feels as if it is burning on my arms and legs sometimes which is weird to me also.

Thanks guys,
Shari

Shari, You mentioned that the IVIG might be making your skin "burn." Do you have any other medical conditions that could be making you feel more weak?

Endocrine, rheumatological or neurological conditions can cause those symptoms. It might be worth a trip to your primary doctor and have them think about what else might be going on. A neurologist won't be able to do an overall check of other possibilities. They are a specialist, not a generalist! Definitely get your morning, fasting cortisol checked (adrenal function).

It sure doesn't sound fun, whatever it's from! ;)

Annie

If I could jump through this computer and hug you I would!

I have been having the same thing with my tongue but didn't want to post it because I figured it was "just me" When you said

"about 1 hour later I have problems swallowing and my mouth feels very weird, kinda thick feeling"

I almost cried, because the mestinon helps with the weakness and my vision but the tongue tingling and "swelling" feeling started along with trouble swallowing. I was fearful that it is my body reacting against the mestinon as I am hyper-sensitive to medications, I see my Dr in two weeks so please post and let me know what your Dr says.

You will be in my thoughts :hug: