Welcome Hfleming.

Ok I'm new to this so I apologize upfront for any miscues. My symptoms started 8 months ago mainly being out of breath and as the summer approached my symptoms worsened to include general muscle weakness and fatigue upon exertion. My arms and legs feel like they have lead in them, difficulty swallowing, shortness of breath, blurred vision. I went to primary care and had complete blood workup all negative. I was sent to a cardiologist for a complete work up including heart cath all negative. Then on to a Nuero his intial comment was MG he did one blood test and an EMG on my right extremities both negative he then changed his diagnosis to Malaise wasn't aware that was a diagnosis. Then 2nd Nuero his initial diagnosis was MG as well. He has done MRI, complete EMG, sleep study, and more blood work that he said should have been done to date all negative, except for sleep study I don't have those results yet. He started me on trial dose of Mestinon 60mg 3x daily seems to help some. My follow up with him is tomorrow the 17th any suggestions on what I should ask or other paths to take. This affects my ability to work. I read something on another thread that read ´Specific sets of fluctuating muscle weakness that are exacerbated by heat & repetitive muscle use, improve with rest and cooling´
That describes my symptoms exactly and I'm wondering what else it could be the only reason I think I have MG is because that's what 2 Nueros thought upon examination. I hate to admit this but I had never heard of MG prior to seeing the first Nuero. Thanks for allowing me to vent I would appreciate any advise from any member willing to respond. Thanks

My muscle weakness started with double vision after I had a meningitis/encephalitis during my second pregnancy. The doctors blamed it on the disease. Five years ago I was diagnosed with psoriatic arthritis and Ehlers Danlos syndrome, possibly type 3. I take plaquenil and methotrexate to control the inflammation in my joints. Three years ago - out of the blue - muscle weakness hit me really hard. I had problems with chewing, swallowing and breathing. The neurologist told me it could be MG, but the tests came back negative. I had RNS EMG and a single fiber EMG of my eye. I was dismissed.
I muddled on, but last April talking became almost impossible, and I had to start using a wheelchair since my legs became to weak. My PCP sent me to another neurologist who revised the tests that were performed earlier. Same outcome. Blood tests still negative.
Unfortunately my lung function has deteriorated rapidly and I was admitted for tests to determine if I needed nocturnal ventilation. So far, that's not necessary, but my coughing force is extremely low and I had to start air stacking.
Current situation: slurred speech, difficulties breathing, restrictive lung function disorder, difficulties swallowing and chewing. Neurologist number 3 thinks it's MG, but does not offer any treatment since the sfemg of 2012 was negative and I have no antibodies.
The pulmonologist says: neuromuscular disease, but offers no treatment because I don't have a real diagnosis.
I've lost my health, my job and a large part of my life. I think it's cruel to treat people like this. I already have another autoimmune disease plus a hereditary connective tissue disease, EDS. Why not offer me a test treatment? I have all clinical symptoms of MG. Everybody says I have MG, but they can't prove it. Sorry about the rant and thanks for listening.

Skyler, Since you are on Methotrexate, the antibody tests would most likely be negative! That's what those drugs do—get rid of the immune attack that causes antibodies! Stupid doctors.

Did the do the MuSK antibody test? Did they even consider a congenital myasthenic syndrome?

Have you been tested for lupus?

Do you live in the UK by any chance?

Please do a post in the regular part of the forum so we can help you!!! You are in pretty bad shape.

Annie

Hey. I was just wondering if you ever got an answer. I also have EDS (which has caused POTS) and have been diagnosed with MG. I am very interested in the link between mestinon helping MG patients and people with POTS. I wonder if there is a connection...

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hi my baby was diagnosed with MG weak eye muscles,so depresed she is 1 yr n 7 months,

Wena, I'm glad you posted, and I hope you realize there are a lot of people on this board that will support you. Getting a diagnosis is the first step in managing MG, and you have that. Your baby may have a genetic version or it may be due to antibodies, but at least you know what you are dealing with. You don't say where you live, but there is probably a support group somewhere in your area, and I would encourage you to find it. Good luck to you, and please keep us posted.



Rose

I don't have an official diagnosis yet but. .. have a thymoma, mestinon really helps, and I have a lot of the muscular symptoms. Waiting for blood tests and emg (which was really, truly awful, as all of you know. ) I was a marathon runner, and now some days I can't make it .25 miles. Some days, like today, I push too hard and screw up the whole day. I'm lonely and scared... and trying to manage the holidays with four kids seems impossible.....

I'd spent most of a decade having "collapsing" spells where I would get dizzy and confused and fall down. I accepted that I was probably "fainting" for most of that, but after a few years it became very clear that I wasn't losing consciousness and that the main problem was muscle weakness. I looked for answers from a neurologist, especially as the collapses became more and more frequent and the muscle weakness became more pronounced and frequent.

I got a TDAP vaccination last April, and was too weak to walk for most of the following summer, spending my time in and out of a wheelchair. I went to a lot of doctors and got a lot of frustrating responses (I especially enjoyed being told it was all in my head by doctors who refused to do any sort of tests).

Eventually, it turned out I had two problems. My 'dizziness' was caused by cerebellum lesions (that appear to be old). I ALSO had Myasthenia Gravis, and my full collapses tended to happen when I was BOTH dizzy from my lesions and weak from MG. The fact that I had two issues made things even harder for the doctors to diagnose.

At this point I'm on Imuran (though it's too early to tell if it's helping) and Mestinon TR, and maybe 3/4 of all my days are manageable. I can walk, though I might limp or look really funny doing it. The remaining quarter of my days have me too weak to safely walk (or sometimes to even unsafely walk), and I use a wheelchair or a walker. Sometimes I can't see or talk or breathe or swallow right, but that tends to be relatively infrequent.

I have been told by neurologist they are 99% sure I have MG, it started with double vision one week ago with drooping eyelid. I have a pain over left eye and have started to feel pains going down my neck. Does this mean it is spreading to other parts?....

Any advice really welcomed

Thanks
Dave