[Whitecap]

Greetings members,

I have a lot of questions about many things in dealing with MG and hope some of you will have some answers or ideas. I will start by only asking a few questions but first will give a hopefully brief assesment of my condition.

to start with around 1998 to 2000 i started having pain in my back under my right shoulder blade. saw many Dr,s but no answers. Than in 2008 I was tentatively diagnosed with ocular MG, i say tentatively because all the test they ran came up negative but I was told this was not uncommon.
After about a year my double vision had cleared up and life was good.
About 15 or so months ago I started having more pain in my back and shortness of breath doing simple things like walking across a parking lot or sweeping the floor. Now I also have sore and tired neck muscles as well as my left leg getting very tired easily. I have been to many Dr,s and have had thousands of dollars worth of MRI,s, Cat scans, physical therapy, full body bone scans, and more. I have recieved four shots of cortisone, which help some with the pain but not much, and two steroid injections. The end result was they said I was fine and nothing was wrong. ( I should state that with every Dr. I advised them of my diagnosis of ocular MG and they completely ignored this fact ). At this point i went back and researched MG and within about 15 minutes i pretty much had my answers.

One of my questions is: I am a commercial driver with a DOT medical card, I have heard that with a diagnosis of MG that I will no longer be able to have the medical card. Does anyone know if this is true?

Second question is: if this is true, can you get on Unemployment?

Last question for now: what kind of work can you do having MG. I'm a 53 year old male and not sure what else I can do to earn a living.

Sorry for rambling on and hope someone has some info
Thanks

[AnnieB3]

Hi, Whitecap.

First, you can't be denied the right to work if you are disabled. Sounds rather odd, doesn't it?

If you aren't able to work, you can apply for social security disability insurance.

Has a neurologist rerun the Acetylcholine antibody test AND the MuSK antibody test?

Do you have shortness of breath? If so, you can see a pulmonologist for an evaluation (including tests called MIP and MEP).

Do you have any pain? If so, can you describe it?

I personally do not work, though I wish I could. There are people with MG who are on treatments and do work. It all depends on what treatments work for you and how you do.

If you say where you live, maybe someone can refer you to a MG expert.

It sounds as though you've been over-doctored, instead of smart-doctored.

Have you had basic testing such as B12, vitamin D, thyroid, inflammatory markers (ESR, CRP, CPK), or any other basic tests?

I honestly don't know by what you've said what is going on with you. You really need a SMART doctor to help you figure all of this out!!

Good luck!

Annie