Posted 1/30/2020 1:04 PM (GMT -8)
straydog, thanks for the reply. I have mostly sensory symptoms at present (in my feet/legs, hands/arms and scalp), numbness and tingling, pins and needles, prickling sensations, I also have some muscle weakness in my legs as well. The most distressing symptoms are from the Erythromelalgia which causes my feet, hands, ears and now my face to turn red and actually increases the temperature of these body parts and the pain feels like they are on fire.
I stopped taking Humira to treat my Crohn's about a year and a half ago due to what my rheumatologist believed was a lupus like illness. I have a colonoscopy coming up in April to see if things have changed from the previous scope in April of 2019, there was very minimal disease at that time. My B12 levels have been at or above 400, I've been doing B12 injections since 2013 before I had my resection. I've been discussing starting Stelara with my GI and I suspect that will happen in April after the scope. I had an appointment with him last week and discussed the neuropathy, unfortunately he's never treated another Crohn's patient who had it as an extraintestinal manifestation from Crohn's and he works at large IBD center, so my hope is fading. He did put in referral to see another neurologist in his hospital system so I will be getting a second opinion. I do think that it will give me peace of mind to have another opinion, even if it is the same as the original.