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

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PMR and Myasthenia Gravis

pollymarierose profile image
15 Replies

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.

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pollymarierose
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15 Replies
Gaz227 profile image
Gaz227

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 .

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

pollymarierose profile image
pollymarierose in reply to

I still have PMR so I can stay with both.

Blearyeyed profile image
Blearyeyed in reply topollymarierose

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?

in reply topollymarierose

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

pollymarierose profile image
pollymarierose in reply to

I'll try it, thank you!

Blearyeyed profile image
Blearyeyed

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

pollymarierose profile image
pollymarierose in reply toBlearyeyed

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

pollymarierose profile image
pollymarierose

Thank you! I'll look for it!

PMRpro profile image
PMRproAmbassador in reply topollymarierose

healthunlocked.com/pmrgcauk...

stiff19 profile image
stiff19

I tested negative for myasthenia but docs still think possible, was asked if anyone had mentioned pmr to me also by dermatologist. I see no one, no rheumy or anything so I don't know how this would be mentioned to me, I could do with seeing a decent rheumatologist as last one a disaster but yes it would make sense and has been heard of. My undiagnosed inflammation is creating havoc on my body.

PMRpro profile image
PMRproAmbassador in reply tostiff19

Did you notice this thread is over 4 years old?

stiff19 profile image
stiff19 in reply toPMRpro

oops no thanks for pointing out

PMRpro profile image
PMRproAmbassador in reply tostiff19

Doesn't matter - just in case you were disappointed if no-one responded except me!

stiff19 profile image
stiff19 in reply toPMRpro

😂😂 never disappointed to hear from you!

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