Do I really have Myasthenia Gravis?
 

Hi, new guy here with more questions than answers.

For several years I've had problems in several areas. As far back as 20 years ago I was beginning to have fluttering vision when looking over my shoulder to back up the car. This was followed by some balance issues and a few times falling at the bottom of stairs and an increasing lack of feeling surefooted.

I was a serious bicyclist for about 10 years and then one day around 15 years ago, I just couldn't get out of bed. I was so fatigued. I was treated for Lyme Disease but never felt any better from it.

Then the slight double vision started and shortness of breath about 4 years ago.

I was scanned and they found a 2 pound thymoma in my chest that had partially collapsed my left lung, was against my heart, and had moved my esophagus to the right.

The thymoma was so big, it had begun to metastasize and I underwent 28 consecutive days of radiation treatment. Everything looks clear so far.

A year after the surgery, the double vision came on with a vengeance and has become chronic. Mestinon does not help at all. Neither does Huperzine A.
The weird thing about my double vision is, I wake up cross eyed and it eases after I've been awake for a while. Then it gets worse when I'm tired.

Stress, fast moving objects, and bright light will bring on double vision immediately. I'm told this is not a typical symptom of MG.

My neurologist prescribed prednisone which didn't do much except make feel anger and rage at the slightest provocation. It was bad.

I have had 4 EMG tests that were all negative for MG and LEMS.

None of my blood work even remotely implies that I have MG.

Since I'm not testing positive for any of it, my only option seems to be prednisone. It doesn't work.

I am traveling to Johns Hopkins next month for further testing. They want to do anther EMG. I don't. I have come to really hate that test.

Any suggestions here would be greatly appreciated.

Hi and welcome.
Sounds like you had a big surgical experience, and made it through -- no small effort I am sure.

My first real symptom was double vision. Blood tests and EMG were negative, neurologist wasn't sure what was going on. He set me up for a single fiber EMG (SFEMG) and that was when I got a difinative answer. If that is positive for MG, you probably have MG.

Others will have different timelines and events In their MG journey.

I think that by going to Johns Hopkins for evaluation you have a really good chance of getting to the bottom of things and getting started on a treatment plan.

Thanks.

My surgery was pretty big deal. 5 1/2 hours on the table.

At night, the nurses would come by to take blood pressure and such and would ask, "why I was there." When I told them I had a 2 lb thymoma removed, they replied, "wow! You're that guy!" as if I was the talk of the doctors lounge or something. It was pretty HUGE.

Such a drag that my condition actually worsened a year after surgery. I thought I was in the clear and getting better.

Went to Johns Hopkins in Baltimore last week and I feel so much better. The level of testing and thoroughness far surpassed anything I experienced at Yale in New Haven CT.

It was worth the expense. I have not been treated for my MG and it has been getting worse since the thymectomy. I'll be starting Tacrolimus and having blood infusions soon. Can't wait to see straight again and maybe get rid of some of this fatigue!