Worsening Speech
 

I just got a confirmed dx last week from the NO. I have had double vision since may of 2014. I have a negative anitibodies test and just had a negative EMG and SFEMG. I saw the NO last week for the results of the EMGS and he still thinks that this is MG. In the last few months I have started having new symptoms when I am too hot or overstressed/tired (ptosis, slurred speech, shortness of breath). This weekend my husband and I went to West Texas to visit family and it was really hot. We were in Wal Mart on Saturday, and I get too Hot and my speech got slurred and I could not say the S sound at all, it just came out as a chhhh sound. I had to go to the produce section to cool off, as my double vision was so bad i couldn't see straight. Since then, my voice has not really gone back to normal, and my right eye has stayed a bit droopy, Usually, after i rest my symptoms go away, but not this time. I sound like daffy duck, my voice is very nasally and i have a slight lisp. The NO did not want to treat me because I have other autoimmune diseases and I am already on Methotrexate and a Biologic, so he is referring me back to the neuromucsular specialist who did my EMG studies for treatment, but he cannot see me until September. Just wondering if this has happened in this way to anyone else and did it go away without treatment. Thank you.

Symtoms
 

glassmom,
You would probably benefit a lot by taking Mestinon, (usual drug for MG), however, I'm not the Doctor, and can't even suggest you do until the Doctor will prescribe it. Before I was dx with MG for sure, mine would come and go.
Rest helped me most. I had all your symptoms, just like you, except the shortness of breath. Watch out for that one, It can put you in the Hospital quick. Mestinon has either stopped or vastly improved my symptoms. As soon as possible ask about it.
Good luck with this, let us here on the board know how you do.
Old West Texas boy myself.
FREDH

glassmom • I've been symptom free (slurred speech, difficulty swallowing and double vision), and in remission, for several months now. I''m not on any medication except desiccated thyroid for my Hashimoto's, also an autoimmune disease. What's working for me are dietary changes (Paleo), gluten-free, vitamins, herbs, minerals - most especially manganese - and rest, rest, rest. Patience is a plus, too.

It's been a long haul trying to figure out what works and what doesn't. I see a holistic practitioner plus a neurologist and an internist (both traditional in their approach) ... so, for me, it's been a combination of reading, discussing, asking questions, and taking what I like and leaving the rest.

You can get better.

FREDH,
The NO gave me Mestinon to try a few months ago, but it did not help my double vision and gave horrible stomach cramps and headache whether I took with food or not. I have been tempted to try again since other symptoms started, but the side effects were so bad I hesitate.

Try cutting the dose in half. You also can take immodium with it. You really have the symptoms of MG. If my diagnosis is correct, then that is likely what you have. I do a lot better with cellcept and mestinon.

Before you cut the dose in half... what was the dose?

Stomach problems are a known side effect. But did the Mestinon actually help. If it did then it might be worth trying again. But OMG is usually the least affected by Mestinon.

It is certainly worth trying as the effect, if any, is quite rapid, and the drug is out of your system quickly if it doesn't work.

Mestinon
 

glassmom,
The side effects of Mestinon should get better in time. It certainly stopped a lot of my symptoms, which are very much the same as you are having. You should not have to feel like this. Get your NO to try something. There are several drugs to help.
Good luck
FREDH