FAQ/Help |
Calendar |
Search |
Today's Posts |
11-18-2014, 02:28 PM | #71 | ||
|
|||
New Member
|
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. |
||
Reply With Quote |
11-18-2014, 10:24 PM | #72 | ||
|
|||
Grand Magnate
|
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 |
||
Reply With Quote |
05-10-2015, 05:13 PM | #73 | ||
|
|||
Junior Member
|
|
||
Reply With Quote |
05-15-2015, 08:55 AM | #74 | ||
|
|||
Junior Member
|
|
||
Reply With Quote |
07-23-2015, 03:21 AM | #75 | ||
|
|||
New Member
|
hi my baby was diagnosed with MG weak eye muscles,so depresed she is 1 yr n 7 months,
|
||
Reply With Quote |
07-23-2015, 05:13 PM | #76 | ||
|
|||
Junior Member
|
Quote:
Rose |
||
Reply With Quote |
12-08-2015, 06:09 AM | #77 | ||
|
|||
Newly Joined
|
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. |
||
Reply With Quote |
12-22-2015, 11:16 PM | #78 | ||
|
|||
New Member
|
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.....
|
||
Reply With Quote |
12-28-2015, 09:21 AM | #79 | ||
|
|||
New Member
|
Quote:
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. |
||
Reply With Quote |
03-14-2016, 05:50 PM | #80 | ||
|
|||
Newly Joined
|
Quote:
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
TOS - diagnosis, care & treatment | Thoracic Outlet Syndrome | |||
PatientsLikeMe Unleashes Real-World Treatment and Symptom Information to the Public f | ALS News & Research | |||
Diagnosis and treatment of schizophrenia in primary care | Schizophrenia |