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Old 11-18-2014, 01:28 PM   #71
Skyler
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Default My long road

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.
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Old 11-18-2014, 09:24 PM   #72
AnnieB3
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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
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Old 05-10-2015, 05:13 PM   #73
michaelunty
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Quote:
Originally Posted by radarmomma View Post
I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore
Hi, did you ever find/get answers to your symtoms? So similar to mine.
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Old 05-15-2015, 08:55 AM   #74
davew41
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Originally Posted by michaelunty View Post
Hi, did you ever find/get answers to your symtoms? So similar to mine.

get vitamin d3 checked asap
dr calls it vitamin d 25 hydroxy test
bet its under 30 actually guarantee it is..
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Old 07-23-2015, 03:21 AM   #75
wena
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Default baby MG

hi my baby was diagnosed with MG weak eye muscles,so depresed she is 1 yr n 7 months,
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Old 07-23-2015, 05:13 PM   #76
WildIrish
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Heart My heart goes out to you

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Originally Posted by wena View Post
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
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Old 12-08-2015, 05:09 AM   #77
SwetlanaIndian
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Angry Do I have MG?

Hi all,

For me, it had started about 10 years ago, with body pains and weight gain. I visited Ortho, but he said nothing serious, and prescribed some exercises. With exercise, the pains would only increase. After a great deal of pain, stress, finally i was diagnosed with Subacute Autoimmune Hypothyroidism. Taking medication for it for the last four years has not improved my pains a bit. Now it has only worsened. I have chronic chest pain, swallowing difficulty, pain at the back of my left leg (MRI revealed one hypoechoic region at the sacroiliac joint which was surmised to be idiopathic edema.), breathing difficulty, and progressively weakening left side of the body. When I visited the doctor, he burshed off the symptoms as GERD, though I do not have belching and heart burn. Medication for GERD does not improve things either. Though I had undergone endoscopy once, and it revealed patulous esophageal sphincter.

So far, there is no ptosis, but I can feel that there is some issue with my left eye. After I apply Kajal, I can notice that certain portion of my left eye lid is slower to return to normal position after being stretched. And often, I involuntarily squint the left eye when sitting idle till I notice it and set it right.

I have a hunch that I could have mild MG with thymic abnormality, but no doctor is taking this seriously. My chest pain fluctuates and sometimes it becomes terrible to bear. In those occasions, all I want to do is to lie down, and do nothing. I also have mild cervical spondylosis.

I got x-ray done, but it revealed nothing. CT Scan is too expensive. Please advise me.
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Old 12-22-2015, 10:16 PM   #78
abogadamama
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Default My story, short version

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.....
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Old 12-28-2015, 08:21 AM   #79
gtg287y
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Quote:
Originally Posted by Jo*mar View Post
Feel free to use this thread to post your story of diagnosis, health history & treatments.
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.
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Old 03-14-2016, 05:50 PM   #80
Glenmeadowfarm
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Default atypical MG

Quote:
I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.

Abby
Hi, Abby! I have seronegative MG as well; no antibodies. At one time, there were 2 (out of 3 they tested for at the time); I've never been tested for musk. I get that trunk weakness and have to be careful if I lean forward to adjust the miniblinds in the window, I get this back and forth tremor like my body can't balance itself and my head wobbles and feels like its going to tip me into the window. Like you, if it's down in my legs, it's a really bad spell. Mestinon did not agree with me, made me incredibly jittery and sort of jerky feeling. Prednisone is what I rely on to pull me out of bad slump, I don't take it constantly, just if I am crashing. I have had short and long remissions, usually several months every year, and it seems to cycle on its own up and down. There are always down cycles that I iknow the cause of -- a virus, overdoing, big time emotional upset, etc. But it does definitely cycle on its own and is, to me, one of the most challenging aspects of the disease. Do I suit up for my good days, or for my bad days? I recently had such a bad low that I had trouble getting oxygenated for the first time ever, quite scary. I had to make some significant changes in my life to make my life manageable when I am in a down, including letting my dogs go to other homes and sending my son to live with his dad, don't know if its permanent or not. Very hard, but you have to rest aggressively and do all you can to stop the downward spiral so you can enjoy the respites!
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