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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@qvt

So, I'm 72, live in Oregon and was in relatively good shape until two years ago when I woke up one morning and my left quadriceps didn't work. everything else was fine and there was no pain associated with this. I just couldn't raise my foot off the floor by lifting my leg. We took a quick trip to the KP Urgent care where we were sent directly to Portland Neurosurgery Center. After a thorough work-up, it was a small bleed on my lower spine. They kept me there for 5 days, pumped in steroids and sent me home. Since then, I've recovered about 80%-85% of the quad function, and I'm OK with that.
Then, six months later, I begin to notice a gradual loss of control on both legs. Restless leg twitches, nighttime leg spasms, slow loss of sensation on my lower leg surfaces. Still, no pain. The spasms have gradually gotten stronger, but really only at night. But when walking I feel like I am like a 2-year-old, just learning how to walk. There are some balance issues but no vertigo, of course every med I take warns about that. And again, no pain. My feet are are pretty well numb to touch, but not completely and not all the time. A1C is about 6.1.
I try to exercise/walk 1-2 miles a day and sometimes that seems to help for awhile. But the progress has continued slowly downhill. Dr. says "Idiopathic Neuropathy", no cause, no cure. Tests say it's not MS or ALS. And that is about all I know. They may be a family history as both my Mom and Dad had something similar in their 70's. They both passed from coronary complications of lifelong smoking (heart attacks).
That's my story and I'm sticking to it. But I would like to know if there is anything reasonable I can do to slow/arrest the downhill slide.
Thanks.

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Replies to "So, I'm 72, live in Oregon and was in relatively good shape until two years ago..."

@qvt, Do your doctors think your symptoms are all related to the small bleed on your spine? Did they mention Spinal arteriovenous malformation (AVM) as the diagnosis? Here's some information from Mayo Clinic about Spinal arteriovenous malformation (AVM): https://www.mayoclinic.org/diseases-conditions/spinal-arteriovenous-malformation/symptoms-causes/syc-20355613

I did not find any discussions related to a spinal AVM but there is a discussion on AVM, which I recommend at least giving a look here --- Arteriovenous Malformation (AVM) Survivors and side effects: https://connect.mayoclinic.org/discussion/arteriovenous-malformation-avm-survivors-and-side-effects/

You also can find more information and resources on this page --- Arteriovenous Malformations and Other Vascular Lesions of the Central Nervous System Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Arteriovenous-Malformation-Fact-Sheet