Hi
I was hoping you could help. I have been having muscle issues causing
face drop
head drop,
vision issues,
limb muscles weakened,
breathing issues.
Speech dyastheria

I have been in hospital had nerve tests, blood test but neuro consultant said they are clear, but still looks like mg.

Can you tell me if those tests are the only way for a diagnosis or can I ask for something else. These melts are ruining my life and I really want to get to the end of the issues and wondered if you could give any advice?

Starting to think I am going crazy and I am making it happen on purpose.

Any advice will really help.
Thank you
Christine

Hi, Christine. I'm sorry you're having such severe symptoms and that the diagnosis isn't clear.

Can you be more specific about the tests? First the blood tests: MG is caused by antibodies, but there are three different antibodies commonly tested for. The most common of these is the AChR antibodies. Some people who test negative for those have the MuSK or LEMS antibodies. A neurologist should test you for all three. You should also know that a significant number of people with MG test negative at first, and positive later, or sometimes keep testing negative. Do you know if you've been tested for all three kinds of antibodies?

Second, can you describe the nerve test? Do you know if it was just an EMG or a single-fiber EMG? A single-fiber EMG is a lot better for testing for MG. If it was a single-fiber EMG you had, it would be like this: the doctor would insert a needle into your muscle (arm, thigh, or face, usually) and then ask you to clench the muscle slightly for maybe ten seconds or so while the needle stays in.

If you didn't have all three blood tests and a single-fiber EMG, I would suggest finding a neurologist who specializes in the diagnosis of neuromuscular diseases. There are many of us on this forum who have never tested positive for any of the antibodies, and who were diagnosed by single-fiber EMG.

Abby

I was diagnosed using the Tensilon Test in the hospital during an exasperation in Jan. of this year by a neuro specialist. Since then, like you, my other tests are "normal".
Because of that I can't even find a neuro to treat me.
I have the trunk issues like you. It also affects my ability to hold my head up for any extended period. It also affects my respitory muscles to the point I have been intubated.
I am glad that you are being treated with Mestinon. I am on that as well as CellCept. The hosp. neuro put me on them and my PCP refills them for me.

Stellatem I am trying to locate some one who has actually been diagnosed with Lems. I was diagnosed 9 months ago and so far have not been able to locate anyone else in Australia despite lots of people trying for me. Many thanks.

I have Congenital Myasthenic Syndrome. It is rare, and even more rarer then
MG. I doctor out of Mayo Clinic for it. Lived the majority of my life thinking I had a form of Muscular Dystrophy until about 6 years ago, when I was diagnosed with CMS. I have been blessed because I was so sick, weaker, had a gtube to feed me, and had full time care. Now I take Albuterol 3 times a day and I no longer have a gtube, no longer need full time care, and I am tons stronger then I was 6 years ago. I have to doctor for this condition at Mayo Clinic. I live in Ohio and noone here knows how to treat it. I would like a sense of community with other MG or CMS patients. I want to hear others stories. I hope I can find that here.

Hi Christine..
I too experienced a lot of the same issues you do. MY lips get numb at time, my speech sounds like I have been drinking as well as my right eye gets drropy. Since I was diagnosed and placed on Mestinon and Mycophenolate, it seems to have helped. I still have episodes when I get realy tired or stressed or try to chew too much. But no your not going crazy it all seems to be part of the disease.

Ron

It depends on what you are classifying as a nightshade. To a vegan there are thousands of plants they call nightshades. Most belong to an order called Polemoniales, and they are loaded with alkaloids. They could have hundreds of effects on the neuromuscular junction or none. Proceed with caution. In particular, anything with belladonna would not be good because the atropine is and anticolinergic and the opposite of Mestinon.

My experience with MG is that exotic dietary changes will flip your symptoms all over the place. I would abandon veganism for awhile unless your dad is under the care of a good physician who knows natural pharmacology, neuromuscular diseases, and molecular immunology. Let us know if you find one.

*admin edit* Note what they say here shows that some nightshade alkaloids act similarly to Mestinon, a cholinesterase inhibitor.

*admin edit*

Where i live in florida...they don't know much about MG.... so for my family and friends...and so that I dont have to repeat over and over again to people my story with our disease i made a montage video for everybody to see a little of what i've been through nothing special but people dont understand how hard it is sometimes....search my video on youtube called Myasthenia Gravis (my story)

I am worried about starting Imuran. I am taking Mestinon 60 mg 3x/day and timespan at night. I still am SO TIRED and my Neuro says I am uncontrolled and wants me to start Imuran. I worry about infection. Also how long does it take to feel better? I am not sure if I'm posting this in the correct place.... . I am not experienced on this site yet. My Neuro seems certain I have Mg, but both antibodies tests are negative . I haven't had the Lems test. So could I have something different? My eye droops, my legs feel like lead when I tire which seems all the time now. I do have trouble swallowing at times and breathing is more difficult. Should I insist on a positive diagnosis before starting Imuran? My Neuro says no other ailment presents like mg. I still am concerned. Should I start Imuran as he suggests? He does currently treat 25 MG patients besides myself. I appreciate you taking time to respond. Thank you.

My story is a long one....16 years without answers (I will admit that I had decided to live with my symptoms and not see any more doctors because I never received answers)...
1997 - promximal arm weakness - I was a choir director at that time and had been able to direct entire rehearsals. It got to the point that I could not direct one verse. Doctor diagnosed me with hypothyroidism. Treated and within normal range, but symptoms did not go away.
1998 - discovered that my grandfather who died before I was born had a form of muscular dystrophy. Convinced that was the cause of my symptoms, which included thigh fatigue, upper arm fatigue and chewing fatigue, I went to the Hershey Medical Center and was told I did not have muscular dystrophy. Still not convinced, I had DNA testing done around 2000-2001 and discovered I had one genetic marker but not both for Fascioscapulohumeral dystrophy.
I have seen a neurologist who simply read diagnoses from a book (yes, while sitting in front of me) and could not determine a diagnosis. I saw a physiatrist who did EMG testing and said I was "grossly normal" and maybe had a variant of muscular dystrophy.
Now - my symptoms of thigh fatigue, upper arm fatigue, chewing fatigue, occasionally base of tongue fatigue, slightly droopy eyelids and now vocal cord fatigue are starting to affect me more...at this time my muscles are sore. I hate my elbows to be bent. I have a hard time falling asleep due to discomfort at the end of the day.
I am a speech therapist and was aware of Myasthenia Gravis, but more so when speech becomes dysarthric. My speech does not slur, but in the past 2 years, I have progressive problems with my voice. It will tire and hurt to the point that I can almost lose my voice while singing...but it does come back fairly quickly with rest.
Could I have a form of myasthenia gravis? I want to see a doctor and determine, but I have moved to a fairly remote area (Idaho). How do I find a good doctor who understands myasthenia gravis in all its forms within a 4 hour drive or so? I could go to Salt Lake City, Boise, or here in Idaho Falls...I just hate chasing another avenue and being disappointed with no answers....again! Any thoughts? Thanks!