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Old 10-29-2018, 04:41 AM   #91
aielwen
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Originally Posted by LeeMac View Post
Greetings,

I've recently been diagnosed with MG. Honestly my neurologist is still a bit skeptical because I tested negative for AChr antibodies and the symptoms came on after a bad concussion. However, my response to Mestinon is like night and day for resolving double vision, tension headaches, and overall fatigue.

My question is how much variability is "normal?" The double vision is fairly consistent but other muscles seem to vary greatly from day to day. Some days it's my legs, others my arms, and recently breathing which eventually passed. I understand it can vary, but I guess I expected that at least which muscles would be affected would be somewhat consistent.

Does anyone else experience MG this way or should I be considering asking the Dr. about other Dx?

Thanks, Lee
Hi Lee, please feel free to read my introduction post on this thread. I am triple seronegative, but also find it's night and day with mestinon. Get a Single Fiber Electromyelogram (SFEMG) test done. It is considered the gold standard for MG for those who are seronegative. You should also get tested for LRP4 which is the latest antibody discovered to cause MG. Unfortunately, there are likely MANY antibodies that cause MG, but we only have tests for 3. If you are like me and test negative for LRP4, welcome to the small club.
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Old 11-10-2018, 01:20 PM   #92
bchgrl
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Default Sudden onset of MG

Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active healthy 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelid was "swollen" and I thought it was because I had messed with my contacts. I realize now that was the droopy eyelid. Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, better call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. Trouble chewing, holding my head up, walking, etc. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. When I went in for the surgery, they decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stars with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this new normal of mine would be greatly appreciated!
Thanks!
Kristi
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Old 11-10-2018, 08:38 PM   #93
kiwi33
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Hi Kristi

Welcome to NeuroTalk .

I am sorry to read about your MG. I don't know much about it but I am sure that other members will be able to offer you support and good ideas.

Best wishes.
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Old 11-18-2018, 06:56 PM   #94
Mikanro
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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.
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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Old 06-07-2019, 01:46 PM   #95
Mountaineer
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Default new here

I am a 38 year old male, I am new to this forum.

I have struggled with a mystery illness for the last 10 years. I was diagnosed with MG last year by my nuro who specialized in rare nuro conditions.

Took mestion for the last 12 months life was great, training crossfit and Olympic weightlifting with no problems what so ever at all. Then over the period of the last month I am back to not being able to walk very good, swallowing is weak and eyes a dropping.

Life with MG I guess.
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Old 06-07-2019, 03:49 PM   #96
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Hi Mountaineer

Welcome to NeuroTalk; I hope that you will find the community as knowledgeable and supportive as I have .

The MG forum is very active so I am sure that you will get lots of support and good ideas from other members.

All the best.
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Old 10-14-2019, 09:52 PM   #97
Lala 452
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Default MG crisis


How can I get my mom through the chronic exhaustion from the mg crisis?
My mom is not rebounding it’s almost 2 months


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Old 10-15-2019, 10:24 PM   #98
LeeMac
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Originally Posted by Lala 452 View Post

How can I get my mom through the chronic exhaustion from the mg crisis?
My mom is not rebounding it’s almost 2 months


I need regular IVIg infusions in addition to Mestinon.
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