Hi everyone.

This is my first post. I am in the process, after four long years, of being diagnosed with Myasthenia Gravis. It's been a long, horrible journey, and now that I'm nearing the end I'm not sure what I think.

I'll try to type something up later that goes over my history, but for now I've got a couple questions.

Does anyone experience memory loss and cognitive dysfunction? Also, does anyone find that they... 'twitch'?? Not the under the skin type, but more like when you're falling asleep at night..... you know when you kind of JUMP a little? Like that, but not when you're falling asleep. lol

Thanks all.

Oh! I have another question! The blood test that tests for MG. What is this about? My bloodwork showed negative, but my doctor said that means nothing??

As for the twitching- I get muscle twitches all over, not sure if thats what you mean.

- Yet about the antibody blood test- I still have MG and have tested negative for the 4th time within the last year. Your antibodies could be 'hiding' well enough so that the blood test cannot recognize them. I was diagnosed through an EMG, you may want to consider that- ask your neuro. Expensive test, but if you insurance covers it then you should be fine.


Hope this helps!
-tyson

Hi Tyson,

Thanks for the reply! So for the muscle twitches, is it like your muscle makes your arm jump? or like the kind that's under the skin?

I did have an EMG. Two actually. The first said something in the muscle part about positive waves. After that they thought I might have MG or Mitochondrial Myopathy so they did a biopsy which came back (like most things have!) negative or non conclusive. After that, my neuro sent me to UC Davis Neurology where THEY did the 2nd EMG. That one was a lot more in depth than the original one and they spent a lot of painful time on my neck. I haven't gotten the report yet for that one, but he said something about there being decriments and that he wanted to do a...... fine needle emg? Oh no, a single fiber emg, to confirm what he is certain is MG.

I'm hoping to get that done before the year is over. I've had so many dang tests that I've met my personal deductable so everything is covered @ 100%. But December 31st puts me back on the $ chart. lol

Hello!

I am glad you finally have a diagnosis, four years is a long time to have MG without a diagnosis.

I get twitches on occasion, usually my arms and legs, but sometimes my face. I think it is from the Mestinon, since my twitches seem to occur about 1 hr after taking it. Are you taking Mestinon?

I don't have memory loss but I often do get something like "mind fog", I get confused and temporarily can't remember things. This started after I got MG. Since stress for me triggers this "mind fog" I have to relax when I realize that I am not thinking clearly. This does seem to be a common occurance with MG.

I wish you the best.

Hi, I'm the resident hyperthyroid person, I think! Have you had your thyroid tested lately? The jumping you describe could possibly be a symptom of Graves disease, which is another autoimmune disease that sometimes goes along with MG. Your immune system attacks your thyroid and sends it into overdrive (hyperthyroidism). I think all MG patients should have a basic thyroid blood test anyway. Even people without MG should have one now and then, since hypothyroidism (the opposite problem, which is sometimes caused by an autoimmune disease) is very common.

I'm so glad you're finally getting your diagnosis! I have had symptoms for a year, and don't have a diagnosis yet. They haven't found the antibodies in my blood (I'm currently waiting on the results of the third try), and my single-fiber EMG was abnormal, but not enough to make the doctor confident that I have MG. I think I do, though.

Abby

Welcome to the board!

Good to see you finally have a diagnosis, it's been a long road for you!

There are quite a few people out there who are sero-negative, my neuro says this is not as uncommon as one might think. The twitches can be looked at several ways, some people have them as a side effect to Mestinon, some have them before they takes medication.. If you Google Muscle Fasciculation you will see this is a symptom for several muscle diseases, including MG. It can also be something called Benign Fasciculation Syndrome, which is basically frequently twitching muscles.

At my house we call the mind fog "sometimers" because sometimes I can't remember what I was going to say, or do, finish a sentence! Stress and lack of rest play a large part in how MG effects your memory.

Good luck with your upcoming tests,

Rachel