Severe Progressive Neuropathy

Hello @illac, Welcome to Connect. I can imagine if your symptoms started overnight that it would turn your world upside down. Mine gradually progressed starting in my toes over 25 years or so until I finally sought a diagnosis to find out what kind of nerve damage I had and what could be done about it.

Do you mind sharing more about your diagnosis and symptoms?

I truly believe that it was a medication but they will never admit to that but I woke up one morning and I was just numb from my waist down and I would get like sharp pains in my legs, feet, hands and arms. I thought after a while it would go away. So I scheduled a doctors appointment where they had to shock me with this machine and that’s when I found out I had severe progressive neuropathy. Mentally it has turned my world upside down because it’s like trying to walk again and balance so you won’t fall and though they say most diabetics get this I don’t have diabetes. They also informed me that there is no cure. For the longest I was just like how do I cope what do I do. So constant prayer is all that I have found that helps me through it.

@illac, While there is no real cure there may be a treatment out there somewhere that will provide some relief and a better quality of life. The Foundation for Peripheral Neuropathy has some good information here - https://www.foundationforpn.org/living-well/.

There are some medications and cancer treatments that can cause neuropathy. What medication and condition were you being treated for that you think may have caused the neuropathy?

Thank you so much for your response. No Caner or anything but let me say this. I was on Risperadone and it had given me Parkinson’s shakes. Once I discontinued it it stop but the fact that they never told me that could happen until I was shaking uncontrollably. I am not sure and I can’t say for certain but just out of nowhere seems really odd. Thank you again for all the information you have shared I truly appreciate it.

Hello @ johnbishop,
I am new to this site but
certainly not new to the symptoms of neuropathy.
I too started with the burning , tingling sensation in both feet about 25 years ago that has gradually gone to numbness , paresthesia in both feet and ankles. But my symptoms are positional , only when sitting or lying down. I’m fine when I’m upright and moving.
I would be interested in hearing about the outcome of your research to find out why you have this and what treatment you have begun.

Hi @jalcorn, Here's a link to the post in the Member Neuropathy Journey Stories: What's Yours? discussion where I shared my neuropathy journey and what has helped me -- https://connect.mayoclinic.org/comment/310341/.

In the past year I've also focused on learning more about what connection the Metabolic Syndrome may play with neuropathy. Here are a few sources you may find interesting and possibly helpful:
--- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
--- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/

Hello @illac ,
I certainly hope that you get the answers you deserve as to why this happened to you , especially the sudden onset.
From my end it feels as though the neurologists see lots if this , and unless there is a medical reason for the symptoms, they throw you into the idiopathic neuropathy pool, where there are no answers or solutions.
Prayer has certainly been a constant for me and I will add you to my prayer list.
I wish you well in your journey

Thought you might enjoy this post I made a few years ago in another discussion about idiopathic diagnosis....

At one of our meetings for the Minnesota Neuropathy Association before it disbanded we had a guest speaker – an 80+ year old neurologist from the University of Minnesota – 2 comments he made that got my attention were if you live long enough everyone gets neuropathy and the second one was how the term idiopathic came about for diagnosing neuropathy – from the idiot neurologist who diagnosed it.

Thank you so much. I am trying so hard to just keep my head up and move forward and just trust the process. However it has not been easy but I trust God more than anything. Again thank you for your support and prayers.