Hi all

[Angellealea1]

Hi I recently had an EMG test because of my blood work & symptoms & inflammatory, I have Sjogren's Syndrome too.

I have a positive Anti-Ro antibody & my EMG test showed abnormalities in my muscles, but nerve test was Okish, I do have other abnormal blood work, but my consultant was investigating these.

I'm wondering has anyone else had this abnormal blood work? What Autoimmune diseases have you got, because I hear from my consultant that Myositis can be linked. Starting new meds soon, which are Azathiprine, I'm hoping these will work as a whole to be honest, but if it does come back I have Myositis, as well, then I will possibly need Steroids too.

Thanks for listening x

[Hidden]

Hi Ange - I have about 8 AI conditions, but myositis is not one of them that I know of. However, the SS seems to be causing pretty serious muscle pain. I've got most everything else under control and in remission, but that still crops up constantly.

How do they diagnose / treat myositis?

[Angellealea1 in reply to Hidden]

Hi hun, thanks for your message, to be honest, I didn't realise that an Autoimmune disease, could cause a muscle disease, until my consultant went through everything with me, it's more the inflammatory ones, so that's why my consultant was looking into Myositis, also because of symptoms & having a Positive Anti Ro Antibody, so they do a Nerve & Muscle test, my Nerve test was Okish, but the muscle test showed abnormalities, so I think the next plan would be a lumbar puncture & a Biopsy of the muscle. I'll just need to wait & see what the report says.

Thanks again for your reply 👍

[Hidden in reply to Angellealea1]

Eeks - That sounds a little scary.. Best wishes for a quick answer and gentle hugs...

[Hidden in reply to Angellealea1]

My ANA shows a pattern associated most with Myositis and Scleroderma - which I think are the two rheumatic diseases most closely associated with each other. The main blood test for Myositis as far as I know, is creatine kinase (CK). I know two people with Myositis and Sjögren’s and both are anti-Ro positive. One was diagnosed by muscle or nerve biopsy and hers is very mild. The other was diagnosed by very high CK and symptoms I believe. He may also have had a nerve or muscle biopsy i can’t recall - but he never mentioned lumbar puncture.

I have had a lumbar puncture and it wasn’t great and did show that a systemic process was occurring (paired oligloclonal bands) but it’s now assumed that this was due to my Sjögren’s - which is seronegative ie lip biopsy positive.

[Angellealea1 in reply to Hidden]

Hi hun, gosh it all seems very complicating, like Sjogren's Syndrome even sounds like having symptoms to MS, I can see why it takes years to get dingonsed, like for my self, 4 years to get a dinonostic of Sjogren's, with Mysosits the consultant tested me because of weakness in the muscles & having a positive anti ro antibodies, don't think I've had a blood test for CK, but I did have a positive anti ku antibodies & I think that is linked to inflammatory with Mysosits.

I'm hoping I don't an L.P. I've had one & had a bad experience, so finger crossed there is enough with the EMG test & bloods.

Xxx