Living with Neuropathy - Welcome to the group

@blocker Welcome. You are among friends here. Can you tell me a bit more about your muscle spasms? Where and when do they happen? Is there something that is a trigger? What position is your body in when the spasms are happening? The reason I am asking this is because there can be different reasons for muscle spasms. It could be a deficiency of magnesium. It could be a physical issue of nerve compression somewhere. Do the spasms happen in different places or are they always in the same place? What medications or supplements are you taking? Do you know the side effects of the supplements and prescriptions? Have your doctors tested for markers of inflammation? Do you have thyroid disease or autoimmune disease? Have you suffered an experience that might cause PTSD (post traumatic stress disorder)? Have you had an injury or fall? Do you have balance issues if you are not taking Gabapentin? What do you think is the reason that you have difficulty walking? Have you always had trouble walking or is this a new issue? What kind of shoes do you wear? Do you have vision or hearing problems? I'm asking that because those can be related to balance. Have you been bitten by a tick or insect that could cause a blood born infectious disease? Do you suspect food allergies? Do you have neck or back pain? What happens when you get a flare? Do you have fevers or headaches? Do you drink enough water? Why are you fearful that your life won't get better and that you will live in pain? Did someone tell you something that made you believe that?

So now that I've asked a bunch of questions, I'll tell you that many times in my life my doctors have not known what was wrong with me, and I put on my creative thinking cap and started asking questions about why things are the way they are, and what was in my capability to change. Doctors make mistakes, and they don't know the cause of your symptoms. If you just follow their advice and take drugs to mask pain, you won't actively be looking for a solution to the problem. Any of the things I've mentioned could be something that someone missed or misunderstood that could change the direction of the path you are on. I might add that you don't have clear directions as to what path would be correct, and what changes may be able to benefit you. I asked these things to get you to think about them which might lead to questions you could ask about your health that could change the direction of your path.

You need to understand your pain and try to learn from it. That's a big lesson that I had in my life, and I had always feared pain. For me it was something I had to endure until it was over and as a child, I had no choices, and I learned to fear pain which made it a lot worse. Stress will increase pain a lot. I had a whiplash 20 years ago and have lived in some pain ever since, and had a bulging disc. One day I was stretching my neck and turned my head and heard an audible pop and my head turned further and I felt a strange queasy sensation. I knew what had happened. That bulging disc in my neck ruptured spilling out it's jelly like middle into my spinal canal. Months later, I noticed that when I turned my head, it felt like a dog was biting my ankle, and it stopped if I looked forward again. What I was feeling were bone spurs that grew next to the ruptured disc that would contact my spinal cord when I turned my head. No doctor believed me when I said I could turn pain on and off by turning my head, and over the next 2 years, I just got worse while a series of 5 different surgeons giving their expert opinions didn't think they could help me... seemingly, I had a problem that was too complex to take a risk on that could impact their statistics of surgical success rates and job performance. No doctor wants to fail or get it wrong, and it's much easier to try to treat symptoms instead of understand the reasons behind them. The thing they wanted to do was to put off making a decision and wanted me to have spinal injections for pain. I had only one as a diagnostic test to see if it would take away the pain I had, and it did... all of it.... everywhere in my body, but again the surgeon didn't listen because he didn't understand why I had those results, and why the leg and ankle pain I had stopped temporarily. I developed more pain all over my body, muscle spasms, jumping leg muscles, and I was gaining the ability to cause stabbing pains and shocks to my body with my neck position, and I got dizzy. One day I looked up at birds flying overhead and instantly had vertigo with the whole world spinning around me and it didn't stop when I leveled my head and I fell over. Even though my hand was on the porch railing, there was nothing I could do to stop myself from falling backward. I thought that telling this to surgeon #5 would convince him to help me and let him know that my situation was becoming urgent. It had the opposite effect. Instead, I was told that he would not offer surgical help to me because he thought that it wouldn't fix the major problems I had and didn't want to put me through it. He suggested a differential diagnosis of an inflammatory problem like MS. I felt so betrayed. I had done every test he asked of me during the last 5 months even the spine injection that scared me. I had worked so hard to get past my fears of facing spine surgery, and I was left defeated, but I also realized that I should not have feared him. If he wouldn't look for answers, I would do that myself, and I read all the research I could find about cervical spine surgery, and I looked for another surgeon. I would read the papers on surgeons I considered so I could see the direction of their practice and surgical methods as well as their research.

I thought about Mayo and looked for a surgeon with an interest in the problems I had. I was reading his paper and looked up some terminology and it hit upon other medical literature describing a case of cervical stenosis with symptoms similar to mine. I had an answer and I knew it was right, but I couldn't convince any of the doctors who knew me at the institution where surgeon #5 practiced to help me bring this new discovery to his attention, and I knew he wasn't going to listen to me. He already told me that my leg pain was not related to the spinal cord compression in my neck, and that was misinformation. I had listened to my symptoms and tracked them over time by diagramming my pain on a drawing. What I realized is that I had the life skills to explore and ask questions that could lead me to a path of recovery even though I had a deep fear of major surgery that was going to hurt, and for a long time, and that I should fire a doctor who isn't working for my benefit.

So I did come to Mayo, and experienced truly great medical care. I worked out ways to emotionally confront and defeat my fears, and I could not have done that if I didn't understand where they came from. I used my creativity as problem solving to figure out my medical dilemma. My previous doctors had fears too, but it wasn't about me, it was about themselves and they put their needs first. When I came to Mayo, my medical needs were given priority, and I was able to choose my destiny. I would have become disabled if no one was willing to help me, and my future was dependent on another person willing to take a chance on me. I was loosing what I loved the most about my life in that I was unable to hold my arms up or control their motion, and I was in a lot of pain and could send an electric bolt down my body if I bent my neck forward. I stopped painting because as an artist, I didn't want to produce inferior work. That was difficult and depressing because I had worked for years to develop my talent, and I didn't know if I would be able to get back what had already been lost, but for myself, I had to try, so making a decision to go forward with spine surgery was my only real choice. I was lucky that I had that choice because a lot of people don't get to choose ability over disability.

So then, leave no stone un-turned. Don't accept a diagnosis without an explanation because you deserve better than that. Doctors make mistakes and medicine is always evolving with new knowledge. Someone somewhere is likely researching to find answers, and until then patients have to keep asking questions and looking for answers. I have an advantage in that I understand a lot of medical issues because I have a biology degree, and learned a lot about anatomy in science and art school, and I have learned a lot from my physical therapist, and as an advocate for my elderly parents and their issues. I hope that I've given you some hope, and at the very least just to feel that you are not alone. Patients really do have some control over their pain and problems. Right after my spine surgery, I was able to ditch the pain meds completely and I had a great recovery. The post surgical pain was tolerable and not as bad as I predicted. Our mind has the power to exaggerate and fixate on pain and let fear take control of our lives. On the other hand, we can make other choices and take some of that power back. Let me know more about your situation, and I'll do my best to help. I've done a lot of troubleshooting and have improved my life. Food allergies have caused a lot of pain for me, and I'm careful what I eat.

You may want to look at the Connect discussion about myofascial release which can help neuropathy for some people. It has helped me a lot before and after my surgery.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You may want to consider a functional or environmental medicine doctor. They look for causes and prevention on problems in the body's biochemistry instead of masking symptoms with drugs.
There is a provider finder link for them at https://www.aaemonline.org/find.php

If you wanted to know more about my story, here is the link. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I don’t know.much about it, but have you considered a peripheral nerve stimulator ?

Has anyone in the group had experience with a simulator? I’ve tried a lot of different devices and drugs and nothing seems to work well (or in the case of drugs the side effects have been so bad I had to stop using them).

Hi @jackkdh -- There is another discusswion you can read through to see what people have written about different nerve stimulators, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/.

My thanks John

Thank you for allowing me to join

I am hoping somebody can advise me on where i can find neuropathy slippers.

Hi @marilynjs -- Welcome to Connect. There is another discussion here on Connect that you might want to view and learn what others have found for shoes/slippers that they like and feel comfortable with their neuropathy.

> Groups > Neuropathy > If the shoe fits...right?
-- https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/

Are you able to share a little more about your diagnosis or any slippers you like now?

Hi John . I’ve tries to navigate The Protocol website but haven’t been to successful. I’m wondering if you and others experience negative side effects to the supplements? I’m petite and wondering how dosages can be the same for everyone.

Hi Lynn @lynnaustin, some people have had trouble ramping up to the full dose of R-ALA. It has to be done slowly as in the instructions on the site for the supplement. The dosages have nothing to do with body size (IMHO). It's more about theuropeutic dosages for the different supplement.

Are you having difficulty navigating the website or the Facebook group. It might be hard to navigate the Facebook group and locate the Files section on a Mobile device. I've always used a computer to do that. The only supplement that I first had an issue with was the 1.5 oz of hemp oil every morning. Not a physical thing, it just made me gag trying to swallow it. I've gotten used to it now and can just swig it down. I've never had issues with the website because I only use the Products page - http://solutions2pnpd.com/products/ and the Instructions page - http://solutions2pnpd.com/instructions/. There's not much else on the website. All of the vital information and posts are in the Facebook group which admittedly is much easier on a computer - http://www.facebook.com/groups/spnpd