Many of you know that I was waiting for skin biopsy results last week from my brilliant Neuro, Dr. P., followed by a visit with my GP, Dr. N who is going on maternity leave March 10. The results came back negative for SFN, as well as secondary vasculitis or amyloidosis. He was hoping it would be the smoking gun but no. The only positive from testing since October from my latest "fall" was a +EBV with increasing viral load showing a recent infection. A retest in December has all but the early markers increasing in an unusual pattern (and I didn't have mono or a recent known infection) so he wants me to go to Infectious Disease and see what they say. I asked what could cause the burning/numbness etc. in my feet and hands (stocking glove pattern but sometimes up to my knees) and he said EBV can affect the nerves, but also since my brain MRI was clear, we could pursue spinal MRI as MS lesions can sometimes cause that. This is not the first time MS has been mentioned and I know EBV can be the instigator behind MS, SLE and RA. I also know that SLE and MS have many of the same neurological symptom overlap that makes them nearly impossible to distinguish until damage is irreversible.
Dr. N agrees with the plan to see ID. She has been my doctor for over five years and has seen the worst of it. I probably had symptoms longer but discounted them. She has a great deal of empathy for me. Her own mum has RA. She won't be back full-time until September. I hope we can have this figured out and have a lovely bow tied up around it for her when she returns
So, let me lay out a few of my weird little facts out. I know some of you are deep wells of knowledge of all things autoimmune and unexplainable body phenomena...
Born 9 weeks early but not a NICU baby, childhood diseases: chicken pox @ 4y, rubella @ 7y, blood type A- (two kids, both O+), Daughter of DES, pretty healthy all my life. runner since the Reagan administration (Callaghan for those in the U.K.). Typical "flare" symptoms can include: fatigue, headache (migraine w/o aura), scleritis, oral and nasal ulcers, cognitive dysfunction (esp. word recall and slow processing), mood swings, joint pain, sensitivity to light (eyes), neuropathy, gut dysmotility, along with the stocking/glove distribution I can also have nerve pain in my face and gut that feels like a thousand fire ants under the skin (goes with the slowing of the bowels etc...TMI!) I was diagnosed with sero-RA in Aug'16 and undiagnosed in Mar'17 after 7months of MTX. I have had chronic anemia and had1000mg inofer iron infusion April 2016. It helped and held well until they took me off the MTX, but now am borderline for anemia of chronic disease (high ferritin, falling Hb) ANAneg- 2015...I've had the $million workup and every time they have a positive result and then take the next step in testing and it's negative, they explain it away. This is frustrating but I will keep fighting the dragons until I figure out which one I need to ride. Thoughts???