Anyone with mild(er) MG willing to share?
 

Hi everyone - I'm struggling a bit with my symptoms while I wait for nerve/muscle tests.....and I'm scared - from what I've read here, if I do have MG, it seems it must be on the milder side and I'm worried it won't show up on the tests as I have read people having negative tests with seemingly worse symptoms than I have.

I feel bad for complaining when there are others so much worse off but everyday feels like a struggle at the moment and I wondered - does anyone here have milder MG who would be willing to share their symptoms and how they were diagnosed or if they did actually get a diagnosis??

Thanks
Eve.x

I seem to be quite a bit milder than most, at least for the most part. I was diagnosed last year pretty easily (sero-positive, thymoma, EMG).

My symptoms will vary, but for the most part are manageable. Mostly I have a lot of double vision (mostly with distance or movement now) and trouble chewing. My neck used to give me a lot of issues but it hasn't troubled me regularly for over a month now. I'll have occasional swallowing issues or arm weakness. And I can sometimes feel what some tightness or shortness of breath, but it's very, very rare and has never turned into anything more dangerous. I've never had to go to the hospital due to my symptoms.

Same here except I have a hard time walking any distance and rely on a wheelchair or a rollator for the times I do. My neuro told me that I had a "mild" case. I'm just praying it doesn't progress. I can manage as it is. :)

Mild symptoms
 

My hubby is sero-positive, diagnosed 3 years ago after experiencing ptosis and diplopia. An alert ophthalmologist sent him to a neuro-ophthalmologist, who performed a few physical tests, then had my hubby get blood work, which was conclusive for MG. Meanwhile, all symptoms disappeared for 16 months. When they returned, he first had a little ptosis, then began with generalized MG swallowing issues. We found an excellent MG neuro-muscular specialist, who prescribed Mestinon.

Now, for a little over a year, he varies between 2 and 3 doses of Mestinon per day for swallowing. No muscle weakness, heat sensitivity, breathing issues. The neuro-muscular specialist says that the longer one has little to no change in symptoms with MG, the more likely the condition is to be mostly a nuisance in one's life. That's where he's at, and we pray that he will stay that way. But if not, it's so good to have forums like this where people can share their experiences. Hang in there, and try not to stress over this - stress is bad news for auto-immune conditions.:hug:

Eve. x
 

Eve,

My name is Fred. I also had very mild symptoms, compared to what i read here. About 4 to 5 years ago, I begin to notice weakness in chewing, drooping eyelid at times, a little speech problem, If I talked a lot, and some problem holding my arms up very long. I was sent to a Nuero, who ran every test, except for antibodies, and was pronounced no -problem, just one of those things.
About 4 years later, my eyelid problem got pretty bad, so I went to an eye Doctor, about possible eye surgery. He took one look at me, and said I probabley had MG. He sent me a Nuero he knows, and one blood test and we knew for sure.
My antibody count was very high, but I know now the count doesn't matter much, high or low. You have it --you got it, regardless oF the count.
So, I am one with fairley mild symptoms, and on Mestinon, although it doesn't cure all. still some eyelid problems.

Hope this would help
FRED H

My symptoms are pretty mild, in comparison to some. Mine started out with one drooping eye lid, then two. Then I started slurring my speech, and it eventually would get to the point where I couldn't swallow. There have been a couple of times when my legs collapsed, and my arms have felt close.

That was as far as it ever got. I looked up my symptoms online, and when I went to the doctor I asked him to look into it (I had every single symptom on there, so I was fairly confident). We did the blood work, which came back very positive for the antibodies and I was prescribed mestinon right then. I then got sent to a neurologist to physically confirm my diagnosis and that's when I got on prednisone. It's pretty much completely controlled now, and the only thing I judge consistently is an overall sense of weakness/tiredness.

July 2012, it started with:

-- double vision (diplopia).

-- Left Eye started to cross inward (esotropic strabismus).

-- Left eye-brow and left eye-lid is noticeably lower than the right eye (Ptosis).

-- wrist and arm weakness; I started dropping stuff constantly and I could not hold my arms
up for more than 30-60 seconds at a time.

-- ankle weakness; began tripping more.

I was not diagnosed until I saw an 'Ocular-Neurologist' in January 2014.
-- The doctor just looked at me and pointed out the "ptosis" which I had never heard of, and sent me that day to have a blood test for AChR antibodies. Two days later the test results came back positive and she gave me a prescription for Mestinon 60mg 3-4 times a day.

In February 2014, I had an MRI and CT chest scan. Both were normal / "unremarkable."

In early March 2014, I saw a regular 'Neurologist' who specializes in Neuro-muscular Disorders. She ordered these tests:

-- Single Fiber EMG and RNS (repetitive nerve stimulation). Both results were "normal."

-- Antibody Blood Test to rule out other Neuro-muscular diseases.
AChR -- NEGATIVE <<second time tested>> [I tested positive in January]
AChE -- NEGATIVE
Titin. -- NEGATIVE
RyR. -- NEGATIVE
MuSK. -- NEGATIVE
Anti-Yo -- NEGATIVE
Anti-Ho -- NEGATIVE
Anti-Ri -- NEGATIVE
Anti-Ampiphysin -- NEGATIVE
Anti-CV2 -- NEGATIVE
Anti-MA2 -- Low POSITIVE, but she ruled it negative (whatever that means?)

Hi, I also have "mild" symptoms. About 18 months ago I started having blurred and occasional double vision. I thought I needed new glasses so went to an optometrist who put prisoms in my lenses. That really did not help but I did not have time to pursued it further due to a medical crisis with my father. The stress of the situation brought on ptosis, arm and leg weakness and slurred speech. I was dropping things and tripping a lot. It felt like my tongue and lips weren't working together. I also was having new onset migraine headaches and numbness and tingling in my hands and feet. Testing showed I had a B12 deficiency, my Achr antibodies were negative. I was sent to an opthalmologist for my vision issues. He tested my upward gaze and was convinced I had MG. He recommended a Tensilon test to confirm since I was antibody negative. My Neuro did not do the test in his office and planned to send me to the Mayo Clinic. In the weeks it took to prepare the referral I was getting worse. My chest was heavy and I felt like my throat was closing up ( worse at night). My Neuro told me to go to the ER. I did some research and found a Neuromuscular MG specialist an few hours away. I went to the hospital ER associated with his practice. Luckily, one of the 2 MG specialist was on call that day. He did the Tensilon test which was positive. I was admitted and had a Repetative nerve stimulation test and chest CT that were negative. I also had a negative EMG(well they found mild carpal tunnel). I was told I did not need a SFEMG as it is expensive and would not change my diagnosis of MG. I was on prednisone for 8 months and now on Cellcept 1000 mg a day. I take Mestinon 60 - 90 mg 4 times a day.