Neuropathy

Thank you for responding, I appreciate any wisdom and recommended things that could possibly help. I fell down concrete stairs over my 100 pound shepherd, I believe that’s where I got the fracture. I do have the reports from my orthopedic, he said it was healing and bed rest would help. The Dr.s have never put two and two together though I have always suspected that’s is how I suddenly was struck by this neuropathy . Thank you for your suggestions. I will give the magnesium and lotion a shot. I will look into the alpha lipoic acid.
Thank you so much, I appreciate your time.

Hi Judy
Welcome from this Judy:) (how DO they put the smiley faces on here?)
Your doctor is correct that they don't know much about this damn "thing" that so many of us have. I don't know if it's because all the research has been focused on cancer and no research money for anything else? But, that's another discussion.
I'm in my mid 80's and knew something very unpleasant was taking over my body when I was around 75. I never, to this day, have been given any tests to diagnose what I have. But, reading everything I could find told me that I had the big N! It looks like there are some ways to actually make a determination now....about time!

All I can tell you for almost 15 years of trying one thing after another for relief is that I still get really tough days. REALLY tough days! I decided long ago that this was something that I had and I had to figure out how to live with it and make the best of it." Judys" are strong, tough ladies! Somehow that goes with the name, my mother used to say.
Read everything you can find about Neuropathy. This Forum is the best place to start. See what makes sense in your case for what YOU are going through and remember to spend some time each day in stress management.

@judyeccles
Definitely see an orthopedic spine specialist and get an updated MRI of your spine, both cervical and lumbar. When you fell, you could have done something to your neck.

The “healing” of your L2 vertebrae bone is one thing but doesn’t touch the neurological issues you are having. The orthopedic spine specialist will look closely at MRI results to see how all bones align as well as any pinched nerve roots/nerves and if any part of your spinal cord is flattened/compressed and causing your symptoms.

How long ago did you fall? How old is your last MRI? They will usually do updated MRIs if older than 6 months and you are having symptoms.

Definitely advocate for yourself and don’t let doctors dismiss you or your symptoms. Women need to fight harder to be taken seriously in the medical world. I have fired doctors for thinking I am a hypochondriac when in actuality I had a spinal cord injury at my cervical neck level and causing many of my symptoms. As I type, I am sitting in the parking lot of my orthopedic spine specialist office to review results of my new MRI from yesterday on my cervical spine. I am having a host of new/returning myelopathy symptoms and the MRI shows I have a herniated disc at C6-C7 now that is bulging into my spinal canal and pressing on my spinal cord making it hard to walk, causing numb hands/weak arms, neck pain, etc. Surgery will be in my near future again (just had my lumbar spine surgery in August 2024 and still recovering. I already have a decompression and fusion of C5-C6 and will add more hardware at the level below. Lucky me was born with a congenitally narrow spinal canal which is going to be a problem for me the rest of my life due to degenerative disc disease. I am 55 and female and a single parent of a teen son. Not the life I expected but here I am. I take one day at a time with God and appreciate the small things.

Hi Judy! I started my “idiopathic” journey a little north of you in Little River SC. My medical system in that area referred all special cases to MUSC, and making that long trip while needing a wheelchair was quite the hardship and required an overnight stay because of the distance demands on us. We also took a referral to Duke since we believed it might know a little more and was as equally hard to travel to as MUSC. Long story short: both provided what I’m learning are standard tests and their plans of treatment were the same… to see them every 6 months and watch and see if it gets worse, and if it did, they’ll think of next steps.

My local Neurologist then had prescribed Gabapentin and that’s all I take today. It helps keep the pain in check from my PN and takes the edge off the severe coldness or warmth I would often get in my feet & hands. It’s not a cure and it doesn’t do much for numbness or tingling. I’ve learned to make sure I keep on schedule because missing a dose increases the possibility of those symptoms to return and can take a few cycles to get the medication working at an even keel again.

I decided back then that continuing to go to the medical university hospitals was too much of a travel and financial hardship on my family for a “wait & see” approach and no treatment plan. I decided to use my local Neurologist to do that monitoring and would save the travel back to the distant institutions if I was to get worse. I felt I got better bedside manner with my local Neurologist too, and more of the direct “I don’t know” and partnership that @ray666 describes.

What helped me first was my will to NOT get worse because I wasn’t convinced there’d be a medical solution by the specialists if I did, and then we’d continuing watching to see if I would keep declining. I wanted a plan to maintain or improve during the wait, not get worse! I wanted to get out of the wheelchair. Then I realized how great of a partnership I had (and needed) with my PCP who kept me on track by listening and managing my total healthcare needs. Along with my Neurologist, they made sure I had open access to the Physical and Occupational therapy. I needed to strengthen and adapt to my new limitations. I’m happy to say I was out of the wheelchair in 6 months. I can only walk/waddle short distances and keep my walker and cane on hand for obstacles (steps, curbs, need to carry things in/on). I can walk stores and around sports venues and a few city blocks. I’m handicapped but I can drive!

It’s been 8 years since Little River. Over that time I’ve had to relocate a few times, which meant getting new partnerships with good, supportive PCPs and a Neurologist. I’ve accepted I don’t have a clear diagnosis, cause, or a cure. I’ve accepted that I’ll never run, bike, or play pickleball again. But I’m grateful for what I can do, and call for PT appointments as needed to keep me in hopes of not regressing with this thing. I’m proud to say I d never gotten worse to feel the need to seek out a medical university vs the local Neurologists I’ve had.

I’ve now had to move back to SC, and am closer to Charleston. I found a great PCP and a local Neurologist and know MUSC is still there if I get worse. The greatest tool of all I’ve had is this Mayo Connect forum. Real people with real experience with real suggestions on things to try that might work for us to make the best of our new challenges and getting the most out of our lives!

Thank you so much for your wisdom, I will find a good orthopedic spine specialist, that is great advice given. Now for you I want to just comfort, my husband and I just prayed for you and will continue to. It has to be extremly hard on you and all your going through along with keeping up with your teenage son. I just feel for you. I am with you now in prayer and in my heart. I do know God hears, but all is in His timing and sometimes we just can’t figure it out but His soverignty is our sanity. Please keep me informed.
In love,
Judy

Thank you so much for sharing. I so relate to you with the long trips and the overnighters in Hotels, it’s a 4 hour round trip for us and it is just too much. Just this week I told my husband after almost 3 years of this and not seeing a change that I need to move forward. I found a good physical Therapy group that I start the week after Thanksgiving and praying it will help, along with a good vitamin regiment. I am searching for a new and good PCP and Neurologist. Would mind giving me the names of yours?
I’m so happy for you and the ability to even walk the way you do, what a blessing. Hearing those things give me hope, I appreciate it.

I have neuropathy in my feet. I need to learn how to manage it.