Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
Interested in more discussions like this? Go to the Neuropathy Support Group.
I understand what do you do to ease the neuropathy?
It's legal in NJ just don't know where to begin since I'm not sure where to go or how much to take seeing I'm on a lot of medication.
Hi my name is Diane and I have autonomic small fiber neuropathy. I started having motility issues since 2014. I was recently diagnosed with mild esophageal dysmotility. Has anyone else ever been diagnosed with this and if so what was the treatment.
Hello @dianecostella, There is another discussion you might find helpful that includes esophageal dysmotility as one of the pieces of CREST Syndrome - https://connect.mayoclinic.org/discussion/crest-syndrome/. @jimhd may also be able to share some information or suggestions with you.
Until others are able to respond to your question, here is some information I found that might be helpful.
"What is the treatment for esophageal dysmotility? Achalasia may be treated with drugs that relax smooth muscle and prevent spasm, such as isosorbide dinitrate or nifedipine. Pneumatic dilation is a procedure that dilates the LES with a high-pressure balloon." --- FAQs about Swallowing Disorders | Johns Hopkins: https://www.hopkinsmedicine.org/gastroenterology_hepatology/diseases_conditions/faqs/swallowing_disorders.html
I had a similar experience with the Pfizer vaccine. I won't be getting the booster. My blood work indicates an immune-mediated peripheral neuropathy. The good news is that the symptoms improved substantially about 9 months after the last vaccine. There is a Facebook group for vaccine-injured people called Neuro V Long-Haulers. Everyone there reports about a 9 month timeline for substantial improvement of the peripheral neuropathy symptoms. You could receive advice and support by joining that group. I suggest asking the neurologist to check your autoimmune antibody titer and also your alpha-2-globulin levels. (These are not routinely measured.) My titer increased but then increased again substantially about 8 months after the vaccine. I discovered in the earlier months, that I could control the pain by avoiding sitting completely. Apparently, my sciatic nerve and/or spinal chord was inflamed. My tolerance for sitting is now much improved.
Good information. In what state did you find your specialized PT?
PA, but I think if you call a large practice or a Rehab Hospital, if the person who answers the phone has no idea what you’re talking about, then ask to speak to the PT director or leave a message for that person to call you back or do they have a work e-Mail address you can write to? The director will know exactly what you’re looking for and either they have it or they’ll know a practice that does. Can you tell I got waylaid at the receptionist level? 😂 But we neuropathy folks are good at perseverance, aren’t we?!
Cut out sugar in all forms ( including bread,) use almond flour. No diet drinks. I did a strict diet plus red light therapy. One can get a good light at sgrow they are on Amazon. I use a lot of natural supplements. Try Mega Benfototiamine & Optimized Carnatine the first is a form of B-1 but can penetrate.bllod/ brain barrier the latter is a amino acid. If you are interested private msg me I will be glad to tell.you where I get mine from and why
Hello I've had neuropathy in my ' and legs For will more than 10 years. But about 2 months ago, Tingling and a sensation of numbers started in my hands. My MRI shows Degenerative disk disease and osteoarthritis from lumbar to cervical. This sensation in my hands has become unbearable and cruel. Pain is horrible, especially at night. There is nerve impingement at C6-7. My left hand is awful but now it has begun in my right. Pain management did a cervical epidural at that location a out two weeks ago. The pain has only grown worse. What do I do? To make matters worse, I'm a painter. Please help. I am in CT. I can't put the degree of pain into words. Please excuse errors as I have dictated this. I am 75.
Hello @gladrag, Welcome to Connect. I know it's difficult when the pain keeps getting worse and you haven't found anything that helps. I also have degenerative disc disease and osteopenia but so far my pain is mostly limited to my lower back and it's more of an ache. I also have idiopathic small fiber peripheral neuropathy with just numbness in the feet and some in the legs. I shared my story and what helps me along with other members in the following discussion.
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
You mentioned you are seeing a Pain management doctor and had a cervical epidural about two week ago. Have you told the doctor the treatment hasn't worked and the pain is worse?