Author Topic: Myositis  (Read 544 times)

vrystaat

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Myositis
« on: December 27, 2020, 07:38:44 AM »
There is a direct connection between Sjögrens Syndrome and Polymyositis/Inclusion Body Myositis.
I have the latter, after being misdiagnosed as Polymyositis for 20 years. The treatment is different.

Please: if you develop any weakness in your arms or legs, see your Rheumatologist immediately.

Best wishes for 2021.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

jazzlover

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Re: Myositis
« Reply #1 on: December 27, 2020, 10:26:10 AM »
So what's the difference in treatment?

I'm not sure about weakness, but I sure have pain.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

meirish

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Re: Myositis
« Reply #2 on: January 01, 2021, 11:36:48 AM »
Another thing to watch for is Myasthenia gravis. This causes weakness in the arms and legs that can be intermittent...improved by rest. Mild forms are not as bothersome or dangerous but the more severe forms can be hazardous to ones health. It is an autoimmune neurological disease. Also, it can cause pain in the muscles. Before I was diagnosed with my myasthenia I would complain of the pain in my long muscles in my legs....turns out the myasthenia also causes pain in the muscles.

The bad thing is we need to see a doctor so many times to get things sorted out and it takes time and money!!Good luck all. meirish

vrystaat

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Re: Myositis
« Reply #3 on: January 07, 2021, 06:21:16 PM »
Inclusion Body Myositis has a typical course & does not respond to IVIG. The only thing that helps is daily exercises.
In my experience, it is somewhat more severe than Polymositis. At the beginning of 2020 I was walking with ease, whereas
these days  I need a cane & sometimes a walker. There is also an element of pain in the muscles, sometimes severe.
The chest muscles & arms are also sometimes involved. You quite quickly become disabled.

Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage