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.

Hello and welcome to the NeuroTalk Support Groups.

I've copied your thread over to the Myasthenia Gravis Forum - link below.

I thought that might make it easier for you rather than having to copy it over yourself.

http://neurotalk.psychcentral.com/sh...d.php?t=229166
Do I really have Myasthenia Gravis?

Take care there.

Thank You!

Hi DynaGuy,

This may be a massive long shot, but you are the first person here, apart from me, to have double vision not caused by MG - if your bloods are correct - and I wonder whether the cause of yours could be the same as mine.

In 2013 I was driving back from a Radiotherapy (Colorectal) appt, when I was struck with sudden onset double vision. No pain, no other symptoms. It has remained wildly unstable ever since, during opthalmic tests the strength of corrective prisms needed varied from 5 to 12 in a matter of seconds, and that was a good day. Stress, Anxiety and tiredness makes it worse, as does the fact that my dominant eye switches from right to left and back at random.

All tests for MG were negative, so I had an MRI and a large lesion was found right through the middle of the Pons area of my brain. This is the cause of my problems. It is irreversible, but I wear distance glasses with a lens fogged out as a passenger in the car - I cannot drive any more - and to read a screen and type on here I have to cover one eye with my left hand, swapping as eye dominance changes.

What happened to my brain is rare, but if you have no other avenue it may be worth investigating. Whatever the cause, vision problems suck, curtailing your independance and making the simplest tasks more difficult.

Dave.

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :Wave-Hello:

Darlene :hug:

Very interesting Dave. Thank You.
It's hard to argue Myasthenia Gravis since they did take a 2 lb thymoma out of my chest 2 years ago, but man, my vision has gotten much worse since the surgery.

I'm traveling to Johns Hopkins in a couple weeks to see if they can shine any light on this. So much of my life has been put on hold because of my vision.