Necosising myositis

[Eddie1969]

Hi

I have been diagnosed with necosising myositis as I have the A positive blood test with the anti srp antibody. I have muscle aches and pins and needles at night but have had an EMG and NCS and been told I have no myopathy showing at present.

I have had a mri and ct but not had the results yet.

As I have no myopathy present at the moment , does anyone know what that could mean for me. Can anti SRP antibody mean I have something else.

Just wondered if anyone else has had similar experience.

Thanks

[gillianTS]

Hi Eddie1969

Here are a couple of articles which are quite complex but might provide some useful information for you:

chanrejournals.com/index.ph...

ncbi.nlm.nih.gov/pmc/articl...

Hope you get some clear answers soon, don't forget to write down any questions you may have about your results it really helps focus on getting the best out of your appointments.

[Eddie1969 in reply to gillianTS]

Hi Gillian, thanks for your reply. I will take a look at the links you sent.

I notice from your other post you have been taking colchicine, I have just come off of these after 6 month as I had myocarditis twice. Not sure how I am going to feel after stopping them. But we will see what happens.

Thanks again take care

X

[gillianTS in reply to Eddie1969]

Yes colchicine was not great for me. I know it wirks really well in short periods for several conditions as was the case with me. Hopefully you will not experience any inflammation with your myocarditis and if so they will not hesitate to put you back on this.

It is likely colchicine might not be great for you with other medicines they maybe considering.

My liver enzymes could not tolerate colchicine and yet it works so well for many with the condition I have. If you have any chance of getting your liver and kidney blood function test checked with your GP or hospital just to make sure everything is within the correct range. It took many months to get mine back into the right zone.

I was diagnosed with mitral valve regurgitation and prolapse a few years ago which they monitor every 2 years. I never know if all these things that happen with our bodies are linked somehow and yet most consultants I see never appear to discuss cases together...

Take care and good luck with your results and treatment.