Myasthenia Gravis Support Group

I forgot to add one of the most troubling symptoms: I am dizzy quite often. My balance is just off. It gets worse when I am tired but that seems to be all the time since I am having trouble sleeping (even though I am tired all the time).

Sounds very similar to MG except for the trouble sleeping- although our specialist (my 15 yr old daughter was diagnosed with generalized MG at 13) said sleep problems are common in MG patients (so you may have an issue that requires a sleep study). Did your neurologist give you a prescrip for mestinon? It is a pill that will help relieve your symptoms about 1/2 hr after taking it. It has very few side effects but only lasts a few hrs. Sometimes improvement after taking it is used as a diagnosis of MG. (Note: If you do have MG, it does sound like you have a rapidly progressing generalized version of the disease. So did my daughter and, at a point, the mestinon did not help much. She finally stopped worsening- and started improving- after a round of IVIg and removal of her thymus gland. These two things saved her life.) Also, I notice you are wearing a bike outfit. My daughter was very athletic and loss of shoulder strength- upon fatigue- was her first symptom. The -upon fatigue- is an identifier for MG. Does your muscle weakness become noticeably worse with use? I also notice you are in the Phoenix area (I was born there and all my family is still there). The Arizona MG chapter is run by a man in Phoenix who recommended two specialists to me at one time (and I know people have received treatment at Mayo there). You may want to contact him as it is very important if you have MG to see an experienced doctor. Everything will get better with treatment. Let us know. Sarah

It sounds like everything I'm going through. Started about 3 months ago. Only I was diagnosed with MS...not MG. My neuro was torn between MS & MG when my left eyeball suddenly stopped moving, but all sysmptoms since are everything you describe. Last night my arm was so wea that I couldn't hold a bottle of fingernail polish. I noticed acouple of days ago that my left eyelid was drooping. I really belive that this is MG. I have never been one to take asprin and other medication on a whim, so I usually just lay down when the muscles get to fatigued. What type of test is your doctor giving you? I don;t see my neuro until Aug. 10th.

To Emarmolejos<

Thank you for sharing your information it does help. The Nuero has ordered a blood work up to check antibodies and an inner ear study that I had today (which was normal so no inner ear issue). They are going to do a sleep study and a heavy metals test. I hope things work out for you. It does sound more like MG then MS to me also. Have a good day.

Sarah100:
Yes, the muscle weakness does get worse with physical activity. If I am doing physical activity most of the day it is almost debilitating by the end of the day. I want to go to bed by 6 PM. Thank you for the information on the MG chapter here in AZ. I will get in touch with them if the diagnosis comes back that it is MG. The not knowing is a real pain.

I just wanted to give an update:

I did an inner ear study yesterday. They said it was normal. But I am still dizzy. That is both good and bad. It is just one more thing that points to Myasthenia Gravis. I also had blood drawn to test for this but it wont be back for a week or so. They are also redoing the Heavy Metals test to verify the previous test results.

Still really sounds like MG to me. My daughter gets dizzy (but, oddly, when she is walking rather than getting up and down). Weaker as the day progresses is also a classic symptom. My daughter had a sleep study and she now moves her legs about 400 times a night (since developing MG). The sleep doc put her on some med to reduce the movements but it has the side effect of making you more tired during the day so the results were ridiculous so, now, she is using melatonin. Seems to help a little. I would be surprised if your antibody test does not come back positive. Let us know. Good luck. Sarah

I agree that all of your symptoms sound just like MG. I didn't know that MG can make people dizzy. I never had that. Until I saw that Sara100's daughter got dizzy, I thought that maybe you could have something else in addition to MG. Many people get 2 auto-immune conditions at the same time. For me, it was hypo-thyroidism and that can make you dizzy. It couldn't hurt to have your thyroid checked just in case. But I guess it could just be extreme fatigue from MG. The fatigue is a result of the extreme weakness. It's like you've been carrying around weights all day.

Good luck on your bloodwork. Keep in mind that some people with MG test negative on the bloodwork. A positive test means you definitely have it; a negative test means you could still have it. A neurologist that specializes in MG will be able to help the most and give you the best diagnosis.

My understanding, from my own expeience and others, is the mg typically starts with a drooping eyelid and double vision...Have you had any of these symptoms? The blood test for ACH proteins confirmed my own mg. Good luck with getting your condition diagnosed properly and treated!
George, Long Island, NY

Hi George. Just FYI, my daughter has never had double vision and her eyelid didn't start drooping until a few months after diagnosis and now only droops first thing in the am before mestinon. At her last exam, the MG guy commented to the student neurologist during the exam that my daughter's weakness seems to manifest in her limbs. It's a weird disease. Sarah