[QUOTE=Alan53;914955 what hurts is no one thinks i,m realy poorly[/QUOTE]

Hello

This one is for you Alan….

Although this letter is not about MG, it describes perfectly how lonely and misunderstood people can feel with an unwanted health condition. I think the writer did a great job for herself and most likely a few others by putting down her thoughts......

http://neurotalk.psychcentral.com/sh...letter+normals

Good luck!

A.

Alan, Have you had other basic tests done like a B12 level, thyroid, Vitamin D, celiac disease panel or other tests done recently?

With a parathyroid level off, you really need to see an endocrinologist. A neurologist isn't the right doctor for that. They can also check other things, like the above tests.

So often, people have more than MG going on. It's good to check out other things when your symptoms are worse. A B12 deficiency can cause dementia if it goes for too long undiagnosed. It can also cause white matter lesions in the brain. So please, have some more tests done!

Also, if you or someone else can take photos or a video of when your are worse, that might help your neurologist.

No one deserves to be in such medical limbo.

Annie

Annie yes I,m under another specialist for my parathyroid and I,m going to be having a scan on my neck and have had many blood tests to see if anything showed which is how my raised calcium was found I am no longer on steroids or any drugs at all for my M.G have also been going to a Gym for 15months which has helped greatly I can understand my Neuro not believing that I have the symptoms
I do a video dairy every few months only of positive things.
Thanks Alan