Hi
@Belbyr.
MUSCLE BIOPSY
The muscle tissue pathology report will be able to tell you a lot, depending on the skill of the pathologist. If you have the biopsy done at a local hospital, it is possible for the surgeon to send the tissue elsewhere for analysis. I would request that your tissue be analyzed by a dedicated
NEUROpathologist.
I had my biopsy and analysis done at Stanford, simply because I am lucky enough to live within driving distance. I have heard that the Neuromuscular Disease Center at Washington University (St. Louis), is also top notch, and they also accept muscle tissue for in-house analysis, from out-of-house surgeons. There's a lot of muscle biopsy info at:
https://neuromuscular.wustl.edu/lab/mbiopsy.htm
When you have a consultation with your neurosurgeon, he or she may already have a good working relationship with a particular pathologist or institution. Just something to think about beforehand.
Based on my own experience, the muscle analysis will rule in, or out, neuromuscular disease and mitochondrial disease. I do not believe that muscle analysis could point to a primary neurological disease, but I could be mistaken. I think that would require a sural nerve biopsy.
UNSOLICITED IDEA
I was thinking about some of your posts from a while back, and I hope you don't mind if I go ahead and share what's been on my mind. If I recall correctly, you and your rheumatologist had sat down together and decided that the bulk of your symptoms were muscular in nature.
Did he or she run a Myositis Antibody Panel for you?
Forgive me if you already know this: Myositis is an inflammatory muscle disease, and it is usually treated by rheumatologists. It can cause a great deal of muscle pain, which you have, and it can also affect the muscles of your GI tract, and you have proven GI dysmotility. It is also autoimmune, which you have mentioned that you strongly suspect given your Immunoglobulin and B cell test results.
It might be worth asking your Rheumatologist to run this blood test before a muscle biopsy, as it will take a while to set up your surgery anyway. My blood was shipped to the Mayo Clinic. I see that ARUP also offers a Myositis Antibody Panel. Honestly, with so much at stake for you, I would not recommend leaving such sensitive testing up to the local hospital, LabCorp, or Quest.
I hope you don't mind that I included an unsolicited opinion in my response. If you do, you can tell me so!
I wish you THE BEST of luck.
Zebra