Anyone relate? Next best steps?
My symptoms started immediately after the COVID vaccine (late 2020) which presented with head to toe neuropathy, extreme vertigo, and tachycardia. I was in the hospital and discharged with possible multiple sclerosis (due to brain lesions on MRI) and POTS. My symptoms improved in a few months.
I have been following a neurologist for years since. They ruled out Multiple sclerosis due to my annual MRIs being unchanged and never light up with contrast (which would signal an active flare). They say the lesions could be due to headaches.
I had a skin punch biopsy which confirmed SFN. My symptoms became quite mild during 2 pregnancies but came back with a vengeance after I stopped breastfeeding.
I pursued autoimmune testing due to the thought that maybe my pregnancies were suppressing my immune system which would explain why my symptoms got better. My blood work was always normal except for a few inflammation labs which they thought was due to the postpartum period.
I ended up asking for a rheumatologist referral because my wrists and ankles were becoming stiff. I had an Avise panel done which confirmed rheumatoid arthritis. I have tried 2 mediations for the RA but both make my neuropathy worse.
My day to day symptoms include constant numbness in hands and feet, Raynaud's phenomenon in my hands and feet (assuming due to SFN making my small vessels constrict too much), stiff ankles and wrists in AM, vertigo, IBS, and borderline POTS (dx with tilt table).
I will admit that I had some IBS and POTS symptoms BEFORE I got the vaccine that started everything, which also made me want to pursue autoimmune testing to see if it just made something I had already had flare up. Never had any other symptoms until after.
Sorry, this is much longer than I thought it would be lol. So I guess I'm asking if anyone can relate to this, any other recommendations for me to try, AND has anyone found anything to help with the constant numbness in hands and feet? I know that's more indicative of permanent damage, but I'm down to try some new things.
I am currently taking
alpha lipoic acid 600mg
Turmeric with black pepper 1gm
Vitamin d 5000iu
B complex
And hoping a new med for RA that won't make my symptoms worse. (Tried plaquenil and arava)