@A MySpondylitisTeam Member i have had EMG with NCV on all 4 limbs, multiple times. Yes, this is my least favorite test ever and i find it extremely distressing. I don't have neuropathy specifically myself, but I know a few people who do.
I have a friend with nerve damage after being hit by an IED, one that has nerve damage after surgery. These are all with a peripheral neuropathy, i don't know anyone with autonomic neuropathy, so can't speak much to that.

I have another condition that affects nerve function in the body, so while my nerves themselves aren't damaged, I have all the same symptoms - weakness, numbness, tingling, pain, etc. My condition is from the message sent from the brain to the nerves that creates the problem. Hilariously it is literally all in my head, which is what some previous doctors accused me of when they couldn't figure it out, but yes it is the brain that is messing up signals. So every time they do an EMG the nerves themselves come back as fine because they aren't the cause of the problem. My main problem started in the nerves in my chest and only in later years started affecting my limbs. My left arm is probably the worst, but because I have it in my chest, it affects my breathing.
I take gabapentin which is a neuropathic pain killer, I tried many different things but this was most effective with minimal side effects for me, but my biggest help has been my neurostimulator. I like it for the fact that it is non-pharmaceutical, and it doesn't kill the pain but does interfere with the pain signals to dull that pain, so welcomed when the pain can be so sharp and stabby and shoot like electricity through me.
If you are shopping around for a pain management doctor I would encourage you to find one who deals with this type of implant and can advise you best for your circumstances. I met a lot of the people I know with similar symptoms through the same treatment. Before being diagnosed with AS, I had a peer support group more specifically for that. I know there are many others on this site that also have neurostimulators, it works for some and not others. Everybody is different, but if this is the route you are taking, make sure you can still get an MRI with the type of implant you choose.
By the way, we are trying to get me off the gabapentin, which may be the only happy consequence/side effect of my AS treatment. But all in all, for someone with a few chronic pain conditions, only being on one pain med is rather brilliant. I have been able to drop everything else, my neurostimulator has been my life saver.

I hope you are able to find the right solution for you. And the right doctor who can help you with your concerns and work with you to find what works best for your body.

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Hi Lola, I had the EMG test on my one foot for neuropathy. It was painful. What are your symptoms? I do have nerve conduction from my knee to the foot, so no real help for my always "Frosty feet". I also have extreme Achilles tendon pain in both ankles. My neurologist says there may be a treatment or procedure to help

Thank you for the information. I'm not sure what was tested on you, years ago, but the electrical shocks, then the 18 gauge needles stuck in, done from toes to groin cause bleeding and bruising. The shocks were like a taser and while it was happening I needed to flex my muscles while 18 gauge needles were put into my skin above the nerves from the groin to my ankles then feet. I drove an hour home and was just "done" and couldn't wait till it was dark so I could go to bed. I'm better today. I'm not sorry I did it. We all have things we don't like. I know other team members that suffer and just keep suffering without a clue, sadly, nor much hope to ever expect more than a wheelchair in their future. AS you said, I'm not there so I'm going to keep walking, keeping doing things I really enjoy. I've been an avid horse rider. I also know someone from years ago that had a horse therapy ranch not too far from where I live now. She's wonderful p with adults and very amazing with children. The motion of the horse walking under a human's body can help to strengthen the muscles in their core that aren't otherwise moved. It's a natural connection. I've known it. So thanks so much. I'm a firm believer in "run as if the gate was open"! Lola

@A MySpondylitisTeam Member. My mom has had severe neuropathy without diabetes - "diabetic neuropathy without diabetes" - for decades Lola. She also has dealt with severe spondylOSIS (not -ITIS) for at least 50 years. Shes 82 now. She had that extreme hypermobility condition that i cant recall the term for offhand. She was a dancer/gymnast/model (not pro) all her life from a very early age, as in under 5. As long as i can remember she complained of pins and needles, extreme cold sensitivity, numbness, burning, shooting nerve pain, you name it. Her medical records contain CIDP, although her current neurologist says she has no sign of that disease currently. Over the decades she has been recommended for more spine and foot surgeries than we can remember. Supposedly her spine needs surgery on every level. This is my source of inspiration - she has never had any orthopedic surgery, walks straight unassisted today, fully functional through multiple forms of functional therapies, yoga, Tai Chi, an extensive stretching routine, mindfulness, meditation, physical therapy based exercise routine, diet, supplemental nutrition. Now she has no feeling in her feet at all, but because she has learned through many books and podiatry consultations how to compensate, overcome, and walk through all the pain while she could still feel it, she is still walking without assistance and driving her car. She says it feels more like blocks of wood. They make her close her eyes for the electromyography exams to be sure she really does not feel anything at all.
I, too, have had that test a few times. The first time was over 10 years ago and i was diagnosed with advanced carpal tunnel in both arms. I haven't had any surgeries for that either. It originates in my cervical spine. I cant recall for certain, C5/6 maybe? I, too, have been recommended for surgeries on my spine, a full fusion of my neck. I, too, have chosen physical therapy and other non surgical methods. If my mom could remain independently mobile, so can I. Just because the tests and recommendations are indicative of a problem doesn't mean surgery and hard core meds are the only, or ideal, solution. As long as we're walking and talking, we're probably going to be ok. 😌🙏 You probably will be too my friend. Just keep improving those dietary choices, keep moving as much as possible, and never lose that indominable positive thinking you possess. It is your greatest tool for survival and truly inspirational to all who know and follow you. Cheers Doll🥰

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