Living with Neuropathy - Welcome to the group

@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

I just started following this group. I am a 76-year-old male and think that I might be experienceing symptoms of neuropathy in my feet based on my 57-year-old son's extreme symptoms. He has had this for 10-15 years already and it has been a long painful expensive diagnosis.

I am wondering if I should start with my primary care doctor or see a specialist now since I am very close to Mayo Rochester. Also what specialty department treats this condition?
I don't want this to get out of control if early treatment could prevent it.

Hello @mazeppabob, I'm sorry to hear your son has been dealing with neuropathy for a long time. I noticed my symptoms in my early 50s and then didn't bother getting a diagnosis until my 70s. A good place to start is with your primary care doctor and see if they can get you a referral with a Mayo Neurologist. I am also close to Rochester and in the Mayo system but it took me a long time before I could get an appointment with a neurologist even with the referral. I think the best thing you can do is learn as much as you can about your symptoms and possible lifestyle changes that may help. Here are a couple of good sites for neuropathy along with information on neuropathy diagnosis & treatments here: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Do you know what type of neuropathy diagnosis your son has?

John thanks for the information.
My son has Peripheral Neuropathy and he also has Planter Facscitis. I thought all his issues were neuropathy. After talking to him again my symptoms might be fascitis. It feels like stones in my shoe at times and is strictly on the sole of my foot. He said to stretch that area by rolling them on a ball several times a day. I will try that first before rushing to the doctor.

There is a another discussion you might find helpful if you have plantar fasciitis.
-- Plantar Fasciitis: How did you get rid of it?: https://connect.mayoclinic.org/discussion/plantar-fasciitis-1/

Sounds like your son shared some good info with you. Hope you can give us an update if it helps you.

Hello @brklimeks, I just responded to another of your posts and was reviewing your story. I really am shocked that you were taken off Gabapentih and Cymbalta totally by your provider before starting medical cannabis. I have been using both of those medications for quite some time along with the cannabis. I need Gabapentin for the tingle tangles in my hands. I need the Cymbalta to help control my anxiety level. Anxiety creates pain. Neither interferes with my "marijuana" program for pain control. MJ is not a be all end all option, in my opinion in that it doesn't take care of every neuropathic symptom.

I am so sorry about your psychotic episode. That had to be very frightening. I understand what it feels like to be on that hamster wheel. Do you feel mentally safe now?

Chris

Yes I’m fine now. Thank you for your understanding. After two years since my psychiatric hospitalization, I’m just putting the pieces together. I asked to be taken off or titrated down on my meds so I could use MJ and he was not happy. He was as not clear on a schedule/dosage for reducing my meds, only the order in which I was to stop them. I was on Cymbalta for pain as well as the Gabapentin and Norco (PRN). I’m not sure if that was reported back to him or the practice owner by the psych department. I’m on so many meds I keep thinking that I should see someone at to just go over all of them. Thanks again!

Ooops! I just saw this now after I already started talking about what I am calling my peripheral neuropathy! I think I pretty much introduced myself in the comment I wrote.

After 2 1/2 years of lower leg neuropathy and having a lot of physical therapy, blood tests, spinal MRI, x rays, ultrasound, and EMG, massage, massagers, nerve stimulators, the next suggested test is a nerve biopsy. How is a nerve biopsy going to help or what is it going to rule out?

Hello @nft, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others.

"Nerve biopsy is the removal of a small piece of nerve for examination. Through a small incision, a sample of nerve is removed and examined under a microscope. Nerve biopsy may be performed to identify nerve degeneration, identify inflammatory nerve conditions (neuropathies), or to confirm specific diagnoses." -- Nerve biopsy Information: https://www.mountsinai.org/health-library/tests/nerve-biopsy

Are both legs affected?