New to neuropathy, terrified and seeking advice from you guys

Posted by tom01255 @tom01255, Aug 21, 2022

I've had neuropathy in my feet for a couple of years, and the neurologist I consulted has never tracked down the cause. I didn't worry too much because it was just a numbness in my toes. This summer, though, it spread to my hands, up my arms, into my shoulders and into my legs. The neurologist did a biopsy and says that it gave no clue to the cause. He hasn't recommended any treatment, and my condition is worsening daily. I've contacted one university neuropathy clinic and been told that it will be a couple of weeks before they decide whether the doctors there will see me. I can't seem to get any medical personnel to take me seriously.

Interested in more discussions like this? Go to the Neuropathy Support Group.

flag64 | @flag64 | Sep 9, 2022

In reply to @dbeshears1 "I guess I liked the TV show “House” so much that I really believed there were..." + (show)

I somewhat agree but I’m also frustrated with my Mayo neurologist after hearing from this group that many of you also have numbness and pain in your lower abdomen. I asked mine if this could be my problem, he said absolutely not so my GI has spent the last 9 months trying to locate a neuroendocrine tumor (had one already) when my symptoms might be SFN! They should communicate with each other and maybe this neurologist doesn’t specialize in SFN…is there such a Dr?

NJ Ed | @njed | Sep 9, 2022

In reply to @dbeshears1 "Thanks for sharing your experiences through this complicated journey. I know none of us are identical,..." + (show)

Deb, you are right! This Mayo forum has allowed me to find out more about PN in listening to others than I could have hoped to get from doctors. We are experiencing things that only we can discuss with others who share these alike symptoms because unless you have peripheral neuropathy - you don't know what this is like. I've found information from others to remind me that although I personally don't know of anyone else with this, friends or family, what I've found on Mayo Connect tells me that we are not alone. So, again, you are right, hearing about others is vital and offers a level of comfort.

John, Volunteer Mentor | @johnbishop | Sep 9, 2022

In reply to @flag64 "I somewhat agree but I’m also frustrated with my Mayo neurologist after hearing from this group..." + (show)

@flag64 sometimes you just have to take the bull by the horn and be your own advocate. Check out this site for some great tips on how to work with your doctors.

The Patient Revolution - https://patientrevolution.org/read

kathl | @kathl | Sep 10, 2022

Hi!

Wondering if you’ve had a punch biopsy? A punch biopsy can help determine whether you have small fiber neuropathy. I was told, “The most common cause of small fiber neuropathy is diabetes, and even people with prediabetes can experience small fiber neuropathy.”
Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system,

I had a puch biopsy at Mayo AZ that came back negative … which then prompted further testing.

In 2017, I experienced toe pins + needles that over days to weeks elevated to my waist. The first neurologist suspected I had peripheral neuropathy. The second neurologist ordered a cervical, thoracic + lumbar spinal MRIs w/ and w/o contrast. At the same time, he ordered AC consult w/ a hematologist to further explore my low normal range B12. (254) as lower range B12 can potentially cause pins + needles/tingling. The thoracic MRI revealed a inactive T7 lesion + I was advised to repeat spinal MRIs in 6-12 mths. The hematologist prescribed a trial of B12 injections + my pins + needles moved back to just my feet. 2 stable MRIs + 2 years of monthly B12 injections later, the pins + needles started creeping back up my legs again. I started experiencing numerous other odd symptoms + consulted specialists of every kind at 3 teaching institutions, including ac3rd neurologist. It wasn’t until a 88° day that I suddenly felt severe difficulty moving my legs. The second neurologist referred me back to the initial neurologist who ordered a punch biopsy which came back negative. Additional testing was done, including a brain MRI add spinal tap w/ results leading to a MS Dx.
I’m so glad that I listened to my inner voice + continued exploring + consulting doctors. Though I’m not happy to have MS, I’m relieved to know what I have + to be receiving treatment.

MS van have wide ranging symptoms … so each person’s symptoms can look totally different, thus making a diagnosis a challenge.

Low B12 can also cause a broad range of symptoms also. Below is an AMAZING YouTube discussing symptoms of low B12.

Hope this info is helpful.

fala | @fala | Sep 10, 2022

Hi,
Yes, this website will help you more than many doctors. I went through this "Unknown", then One Doctor said he "knew and I went through a failed surgery. I have mentioned this before, but as a warning, I had to walk on my heel for a year and it through my entire side off...that is still an ongoing problem. CBD is my savior. I hope it is available in your state.
Best wishes, good luck and all that!!

flag64 | @flag64 | Sep 10, 2022

Hi @kathl I have had the punch biopsy and it was positive for SFN they just don’t have a cause. My A1C hasn’t been above a 5.0 and no low B12. Had talked about lumbar spinal if biopsy was negative. I’m not giving up on cause of SFN since I feel it’s the only way to hopefully slow down it’s progress. Good luck w/the MS.

fisbo | @fisbo | Sep 10, 2022

Neuropathy is difficult for the medics to deal with because there is not much they can do. I have it extremely bad in my feet and up my legs. It has changed my life completely. I am no longer the woman I was.