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denadet (@denadet)

Multiple autoimmune diseases

Autoimmune Diseases | Last Active: May 19, 2020 | Replies (33)

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@johnbishop

Hi @marylcsw, I see this is your first post and I would like to welcome you to Mayo Clinic Connect. Thank you for sharing. I have small fiber PN and polymyalgia rheumatica which is currently in remission. Are you able to share any treatments that help with your health conditions?

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Replies to "Hi @marylcsw, I see this is your first post and I would like to welcome you..."

Hi @johnbishop. It certainly is nice of you to share your experience and knowledge and support and direct the folks here. I’ve never been a member of a group like this, nor do I participate in social media. My story began in 2014 when I began having unexplained twitches and cramping in my shoulder and then my legs. It progressed quickly and the pain and sleep deprivation was very difficult. An MRI shows white matter brain lesions and the initial diagnosis was thought to be MS. As some may not be aware, there is no definitive test for MS. Many meds were tried to alleviate pain and sleep with no success. No sleep apnea – had a sleep study done. Waited 2 years while my neurologist took the “wait and see” approach. The trouble was my symptoms continued to increase to the point my pain was not allowing any sleep at all. I was prescribed Vicodin and cannabis. Sleep got slightly better and I was obviously out of it all the time. Like many here, I have to choose between the pain or the side effects of the meds. I was an entrepreneur who had worked for myself most of my career. Have Meniere’s Disease which thankfully is in remission. In the meantime, back issues popped up, and the next thing I know, I’m having spinal fusion/stenosis surgery which involved fusing 4 vertebrae and 3 discs together. The operation made my SFN worse and created foot drop in my left leg where a permanently crushed nerve gives me increased numbness in my left leg from my hip to my toes. I have little sensation in my feet. I share my story to help. Many here face far more daunting challenges than I. However, I joined the group to help. The time suffering BUT also learning was invaluable. My advice: Believe what your body tells you. You are not crazy. Always get a second opinion. My second neurologist ordered core samples of my calves and thighs and confirmed SFN MS and SFN are often mistaken for one another as symptoms are similar. Lyrica has helped me tremendously. To rehab my back, I did PT at home for 3 months, outpatient for 3 months and now I strength train 3 times a week. It helps. It’s counterintuitive, but it helps. I’m off opiates but suffering more pain. Cannabis helps but is not a cure all. I take 2000mcg of B12 every day. My SFN is supposedly idiopathic and potentially non length dependent. I’ve read people wondering if SFN can cause twitching, bladder control, cramping, and all kinds of symptoms which will make you think you’re crazy. It can. You’re not crazy. Somedays I can barely walk 100 yards. I’m in my 50’s, pretty good shape, not overweight and I try and eat well. I’m far from perfect. One of the many things I’ve learned relates to pain. Trying to divert your brain from focusing on the pain is key in my opinion. Whether it’s medication, laying down, applying heat (I do), wearing the right socks ( I use Footjoy golf socks. Pricey but worth it). In general I find if I can try and focus on something else it can help, but some days I can’t get out of bed. Try and gather as many “tools” as you can. Exercise, yoga, meditation(about to try), acupuncture (didn’t help me), massage, medications. You can buy a TENS unit on Amazon for under $30 which will stimulate and not solve the pain, but help with the distraction. I wish you all well. I’m still learning. I’m happy to share what I’ve learned if it helps in any way. Happy New Year and best of luck to all.

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