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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Hey all! Dad Root from Arvada, Colorado here.
Five Grandkids and counting. Like my Dad before me, I was a railroader most of my life. I have been wrestling with my Doctor's diagnosis of 'Idiopathic Peripheral Neuropathy' for five years now. Numb from the knees down, I wear legs braces to help with foot drop when I walk... otherwise I could trip over a darned PAINTED line in a parking lot.
That 'Idiopathic' part of her diagnosis just seemed lazy to me, so I kept digging for more information. My symptoms seemed congruent with Charcot-Marie-Tooth disease.
When I kept pressing the issue with her (the Doctor) & kept sharing articles that I had found, she actually seemed annoyed that I wasn't going to just keep taking pills (quite ironically) for the nighttime pain and just live with these challenges.
That Doc told my wife & I that this disease will eventually kill me...so I changed Doctors. < insert sly grin here>
I have read several articles concerning Stem Cell research, but it seems there are as many 'expert' opinions as there are articles. I will talk to my newer Doc tomorrow to see what he makes of Stem Cell Therapies for Neuropathy. In the mean time, I'll keep on studyin' this thing. Please feel free to let me know about any articles that y'all find... Peace and Love from Colorado, all. -Dad
Replies to "Hey all! Dad Root from Arvada, Colorado here. Five Grandkids and counting. Like my Dad before..."
Good morning, Dad
Please keep us posted on your experience with this new doctor. I, too, have idiopathic peripheral neuropathy but large fiber (lots of balance issues, but no pain). I was diagnosed in the summer of 2022.
I hope you leave your meeting with the new doctor deeply satisfied.
Cheers!
Ray (from another part of Colorado)
Hi, @dadroot - interestingly, I'm a fellow Coloradan, like @ray666, and I lived in Arvada, CO, and went to high school there. It's a nice place to live. I'm now in the Upper Midwest.
I'm wondering how things went with your newer doc you went to see and what his thoughts were on stem cell therapies for neuropathy?
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Welcome @dadroot, You are not alone in the idiopathic neuropathy club. I chalk mine up to genetics and possibly related to the metabolic syndrome since I was labeled as having pre-diabetes for most of my adult life. You might find it helpful to scan through the related discussions and comments on stem cells and neuropathy. Here's a list - https://connect.mayoclinic.org/search/?search=stem+cell+%2Bneuropathy.
My own non medical opinion is that stem cell therapy is not there yet for neuropathy and probably not in my life time. I did get to listen to some research folks back in 2018 at the Minnesota Neuropathy Association and took some notes with the links to research they shared. I attached a PDF file of the notes but not sure how helpful it is.
I think it's great that you are doing your own research. It's probably one of the best ways we can help ourselves be informed on what treatments are available that might help provide some relief.
Do you have pain with the neuropathy during the day?
18Aug04-MNA-Mtg-Notes (18Aug04-MNA-Mtg-Notes.pdf)