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Mon, Feb 4 5:05pm · Living with Neuropathy - Welcome to the group in Neuropathy

Hi @ericvnelson. I’m sorry you’re having such a hard time. I read your post with interest, especially as it relates to the leg numbness and laminectomy. I had spinal fusion/laminectomy surgery a year ago. Much more involved than just a laminectomy, however, I had previously been diagnosed with small fiber neuropathy – SFN. After the surgery, 3 things happened:
1. I developed foot drop in my left leg. To this day, the core of my left leg and my left foot are permanently numb. When I came home from surgery, I could walk with a walker only.
2. It turns out, there was a nerve which was pinched and after the laminectomy part of the surgery and the disturbance of the surgery itself, that nerve worsened for lack of a better term. It’s crushed. In most cases, after a year whatever you’ve lost with nerves isn’t coming back.
3. My SFN went crazy. Numbness, tingling, pain, cramps, etc. got worse

Now comes the GOOD part. It’s a year later and after a few months of pain meds, and laying on the couch wondering what’s next, as I was doing PT three times a week, I realized exercise helped my symptoms. All of them. So after three months of home PT, i “ graduated” to outside PT. I researched and found the best PT person I could. Went and visited, discussed my challenges, and felt he understood. As I got stronger, my pain level started to drop. Little by little. After graduating from three months with him, I went to a strength trainer associated with my PT guy. I work out three times a week with him. Even with the numbness, he helps me combat the instabilities. The difference has been remarkable. I still have days where I can hardly get out of bed, but my stamina and strength continue to grow. I know it sounds counterintuitive to exercise when you’re in pain, but it’s the best thing for you. I take Lyrica for the neuropathy, it helps but it’s not a cure all. Knocks the symptoms down a bit. I use cannabis in vape and flower form, CBD cream. It takes a while to settle into a new normal. Give yourself some time. A therapist can help you feel like your not crazy. I do yoga occasionally. Very helpful. I’ve learned it helps me to have a “toolbox” to help me control and cope with my limitations. But, they are far less today than they were a year ago. I wish you well. Hang in there

Fri, Feb 1 9:26am · B-6 vitamin danger! in Neuropathy

Hi cokie63. Just a note to say hang in there. You’ll find @johnbishop an amazing resource for guiding through the resources here. Neuropathy can be so confusing and exhausting with its constant changes. You’re not crazy. You may want to consider logging your symptoms and changes as you introduce new things into your body or environment. Different things work for everyone. I hope you find some relief. You’re not crazy. I wish you well

Fri, Jan 25 1:47am · Does Vitamin B-12 help with neuropathy of the feet? in Neuropathy

Hi @retiredteacher. While I can’t cite specific articles, in my experience neurologists look for a much higher daily level of B12 in your blood than a general practitioner does. They may suggest you take it as a supplement. Lack of B12 has been linked to certain neuropathies, I hope it brings you some relief.

Fri, Jan 11 4:54am · where do I find testing for neuropathic OH in the Phoenix AZ area? in Neuropathy

Hello @atlas. While I’m am not well versed in your particular condition, I see you mentioned the Mayo Clinic and @johnbishop concurred. He has proven to be an amazing asset and wealth of info here. I would also google Dr Roberto Bomprezzi. He practices out of UMASS, but I believe spends and practices part of the year in Scottsdale. If you can meet and dicscuss your condition with Dr. Bomprezzi, I highly recommend him. He is a neurologist who specializes in these types of conditions. Cannot say enough about him…

Thu, Jan 10 11:07am · Small Fiber Neuropathy in Neuropathy

Hi @johnbishop. The article link you shared is right on point. I can tell you from experience the EMG and any other test other than the skin punch biopsy will not give the patient a proper diagnosis. I was sent for multiple EMG’s where they would twist my legs like a pretzel haha until they could get a reading. None of the EMG tests over 3 years ever showed signs of SFN. Only when I sought a second opinion, waited six months for an appointment to have the skin biopsy and the QSART test done, did my life change in a positive way. Please don’t get me wrong, I was less than thrilled with confirmed SFN, however, at least now we had a course of treatment. As I’ve said before, Lyrica works really well for me. Many other meds (Cymbalta, etc) did not. Cannabis helps distract the brain. I encourage everyone with potential SFN to read the link shared by @johnbishop here. While it is from 2009, it is the most comprehensive, understandable article on that topic I’ve seen. I wish you all a positive, pain free day

Sun, Jan 6 6:23pm · Multiple! autoimmune diseases in Autoimmune Diseases

@johnbishop – thank you for making me feel welcome. I’m here to hopefully be part of the solution:)

Sun, Jan 6 8:30am · Multiple! autoimmune diseases in Autoimmune Diseases

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.