PMR and Myasthenia Gravis: Has anyone been... - PMRGCAuk

PMRGCAuk

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PMR and Myasthenia Gravis

pollymarierose
pollymarierose

Has anyone been diagnosed as having PMR and Myasthenia Gravis together? I've seen 2 rheumatologists, a vascular surgeon, my gp countless times, and today a neurologist. He understands about MG, and my rheumy's understand about PMR. Alone these 2 diseases were (or symptoms of...) confusing them. But, put together, these 2 diseases make sense about what's going on inside my body. There's a very specific blood test to diagnose MG. I had that done today and should know for sure in a week or so. I just wanted to know if anyone has had this. It finally makes sense to me.

10 Replies
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I had the blood test for MG took ages to come back it was negative but that doesn't mean you haven’t got MG 50% with ocular MG are Negative and 10% of full MG patients are negative very hard to diagnose , I am seeing another neurologist next week the Rhuemy hadn’t got a clue . Good luck .

Hidden
Hidden

I just wondered if you had tried the Myasthenia gravis forum? There may be info there.

pollymarierose
pollymarierose in reply to Hidden

I still have PMR so I can stay with both.

Yes , of course , you can join as many forums on HU that you need to be able to get help or tips for each condition you have .

By looking at information and experiences from all the different sources it helps you build up a programme of disease management that helps reduce symptoms for all of them , and reduces the possibility of one condition triggering a flare in another.

Are you on the Fibro forum too?

Hidden
Hidden in reply to pollymarierose

I never said you couldn't. I just thought you might double your chance of getting info.

pollymarierose
pollymarierose in reply to Hidden

I'll try it, thank you!

There was a post , almost about 8 months ago , title " from GCA to Myasthenia gravis" which is coming up in the side bar of related posts when I read your question.

I had a look and spotted that there was some replies from people with family experience of this condition , as well as some links that PMR Pro included that might help you.

It will be interesting to here what happens with your blood antibody tests .

Perhaps when you have things resolved you could inform us more about it too.

Obviously it isn't common but can occur in the mix for some AI and inflammatory sufferers conditions.

Try and stay calm and relax as much as you can , bee

I just read it and it was very helpful. Thanks so much!

Thank you! I'll look for it!

PMRpro
PMRproAmbassador in reply to pollymarierose

healthunlocked.com/pmrgcauk...

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