[cait24]

Hi. I have not posted in a while. I am double seronegative, sfemg positive MGer. I respond well to Mestinon and IVIG. All my doctors have always said I have something else going on as well. They evaluated for Lupus, RA, dermatomyosotis. All negative. A funny antibody came up on one of the panels - hY5 RNA of Ro and I was diagnosed with inflammatory arthopathy not RA. My symptoms continue to progress but I am stable. The doctors are doing a muscle biopsy next week and feels certain I have mitochondrial myopathy. Any one else here evaluated or diagnosed with mitochondrial disease?
thanks
kathiw

[AnnieB3]

Kathie, It's nice to see you again. I'm glad they were thorough with you.

There seems to be a lack of obvious relation to a specific disease in the literature.

https://books.google.com/books?id=tj...f%20ro&f=false

"Because Ro ribonucleic particles containing hY5 RNA can be isolated as distinct particles, some suspect that this may be the original auto antigen."

So, are they saying that the Ro in lupus has hY5 Ro RNA as the origin?

I've had a muscle biopsy looking for a mito/cytopathy. All I can say is that the biopsy (in my deltoid) hurt like hell, because they can only numb the skin, not the muscle under the fat layer (that's under the skin).

Here's a good article on the serology of lupus. It isn't clear if that particular test is indicative of lupus or not. Lupus is a complex disease or, rather, group of diseases that they are still learning about, as they are with MG.

http://www.hindawi.com/journals/ad/2014/321359/

Did they happen to run the HGMB1 test? It's an inflammatory marker that is now being associated with MG, too, not only lupus (and other disease states).

MG and mitochondrial diseases can coexist. Are they ruling MG out?

I'm glad they are taking this seriously and helping you figure it out. You've known there's been something else going on, too!

Have they checked your kidney function lately?

I just hope you can get some treatment that will make you feel better!

Annie