Hi @johnbishop ,
I've worked in pharmacy since I was 16 (31 now) and studied to be a doctor of pharmacy so I nerd out pretty hard when it comes to medicine. I've been unemployed since 2015 due to my health issues which include small fiber neuropathy, myofascial pain syndrome, fibromyalgia, Raynaud's, migraines, severe insomnia, cervical dystonia from the disc problem in my neck, and autonomic nervous system dysfunction (mainly from the small fiber, but my neurologist assumes that the syrinx in my spinal cord, thoracic schwannoma, and the two lumber disc problems are also contributing factors to the wide range of symptoms). I was in a car accident in 2011 where my car's tires lost grip in the rain while going 65mph and ended up hitting a wall head on. It's assume that most of the above issues stemmed from that. I also have a second ultrasound and a mammogram coming up after two previous appointments and an ultrasound suggested the possibility of male breast cancer. I have a history of treatment resistant major depressive disorder and anxiety as well so it can be difficult to tell which issue is causing which symptom. I was in a clinical trial at Mount Sinai for depression which used sub-anesthetic doses of ketamine, and the anesthesiologist who continued the treatment recognized neurological symptoms that suggested MS. The first neurologist I saw, who had formerly treated me for migraines, would not order an MRI and concluded that my physical exam was normal. I wanted a second opinion, and I was lucky enough to find my current neurologist who has been amazing. Not only did he order MRIs of my brain, cervical, thoracic, and lumbar spine which revealed numerous problems, his more attentive physical examination found abnormal reflexes and sensory nerve damage. My current treatment consists of physical therapy twice a week, a 60 minute myofascial massage whenever I can scrape together the money, meditation, trigger point injections, nerve blocks, ibuprofen, oxycodone, diazepam, amphetamine salts (Adderall), lidocaine patches and cream, and botox injections every 12 weeks. Up until two weeks ago I was also on baclofen, tizanidine, and gabapentin together (I've also tried cyclobenzaprine), but they had no effect on my muscle spasms/tightness, and as a result discontinued them. I've tried Lyrica, literally every antidepressant or medication used off label as an antidepressant or adjunct for depression including those used for small fiber, ondansetron for nausea, sumatriptan injections for migraines, topiramate, the aforementioned ketamine infusions I had monthly worked so phenomenally well that I was prescribed oral ketamine to take daily, which also worked amazingly for my pain (it's a dissociative anesthetic). The high oral dose I was on, however, was beginning to trash my kidneys and urinary tract so I had to stop that (it can cause interstitial cystitis and long-term users have had to have their bladders removed due to such extensive damage). I was prescribed IVIG, but my insurance does not cover it. I've been vitamin B, D, and E deficient for a while despite taking supplements of each, and also am dehydrated despite drinking at least half a gallon of water a day. I have difficulty keeping weight on as well, so malabsorption seems like another likely problem. My neurologist's current treatment plan is to run blood work again in March when I go in for botox injections, and if my vitamin levels are normal and I'm no longer dehydrated, I'm going to start plasmapheresis. We have yet to come to a solid conclusion as to the primary cause of the small fiber neuropathy. My neurologist is 95% sure it's autoimmune (I have a history of autoimmune issues such as idiopathic autoimmune hemolytic anemia my senior year of high school, and have a standing prescription for epi-pens as I have, thrice, gone into anaphylaxis but do not show any signs of an allergy [each occurrence had nothing in common]). I've been tested for just about everything including Lyme, Lupus, Sjogrens, MS, Rheumatoid Arthritis, Celiac's, Mayo's myositis and neuritis panels... all the stuff everyone here has surely been tested for. I'm not sure if it is a national chain store, but I have a 6 ft x 2 ft x 2 ft giant bean bag from 'Yogibo' that is very supportive (my neck, shoulders, and back get severe pain whenever I sit or stand for prolonged periods of time... laying supine is the only position that helps keep my pain at a more manageable level). My main frustrations have been the new symptom of what I refer to as hot flashes alternating with chills, severe nausea, insomnia, and severe pain in certain muscle groups that seem to be in a constant state of contraction. I get fasiculations and spasms all over, but this is different; my physical therapist, neurologist, and massage therapist have each noticed that I am unable to relax different muscles such as my biceps and trapezii (they feel like they are relaxed to me, but the practitioners can feel them contracted). I have tried progressive muscle relaxation meditation, and countless muscle relaxants without any relief. I've tried CBD gummies for pain and muscle spasms which didn't work, but am open to trying a topical. I qualify for a medical marijuana card here in NY, but 1, cannot afford the actual product and 2, cannot use it due to my job in pharmacy (as I said, I'm not currently able to work, but my primary goal is to get back to work). I got some capsaicin cream to try, (I've always recommended it to my patients, friends and family members, and those who have used it correctly have all had positive results, including a middle-aged friend with bad arthritis who was able to start pitching softball again). I searched SFN support groups today, as mine seems to be progressing quicker than what I've expected from my personal research. Once I seem to address a symptom with one of my doctors, I feel like two more pop up. I'm really curious to hear any tips, tricks, or advice others here may have. With all the specialists I see, I average 1 doctor appointment a day, and over the past few months have had weeks with 10 or more appointments. I hear about people having periods of remission, but looking back I've realized that I've had some of these symptoms for over five years. Because of my high impact hobbies and the nature of my job standing all day compounding 1-4L IV bags, those symptoms were ignored. Their intensity has been steadily increasing without any periods of relief, and are no longer something I can ignore. The symptoms that have recently popped up relating to autonomic nervous system dysfunction are quite uncomfortable and very unpredictable. This makes it difficult and stressful to manage them and my schedule day to day. I make a conscious effort to be thankful each day, as I can still physically take care of myself without help from a caregiver, and I know that there are countless others out there that whose symptoms are much more severe and who are unable to do the things I sometimes take for granted like walking, driving, and getting myself ready in the morning. As my cluster of conditions progress, and new symptoms pop up, I have found I'm having a harder time coping with the progressive nature of it all. I'm curious to what extent IVIG, plasmapheresis, or corticosteroids have helped people in this group, and how long any relief lasted. Has anyone found a different treatment or medication that has brought them relief? I apologize for the novel I've written, haha, and hope everyone is enjoying the beginning of the weekend!