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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
new to the group, first post. I have had PN for about 2 years now and have mostly just lived with it. Have a decent neurologist, but he just says it does not get better, so live with it. I am wondering about the value of a getting second opinion from Mayo in phoenix. I also have a few other nerve issues such as dropfoot, a tremor, and long standing ADHD. Luckily, I had a terrific career working outdoors and almost perfect health till i turned 76. I get by on about 3- 100 mg doses of gabapentin weekly, when i need a little extra sleep. I do PTherapy and can still do cardio workouts on elliptical and bikes, but have pretty bad balance, especially on trails with inclines. Second opinion have any value??
Replies to "new to the group, first post. I have had PN for about 2 years now and..."
@gilamonster I’ve had PN for about 8 years. My neurologist diagnosed it as small fiber, but it has since changed to large fiber. It doesn’t seem different but I am having issues with it progressing. Both my feet have numb areas. I feel like I’m walking on potatoes!
You are taking the medicine, I can’t because it makes me very tired. There’s no cure, so I have to try to keep going no matter.
I don’t think going to Mayo is necessary. First, they are usually booked up, and they prefer patients that don’t already have a diagnosis. (my experience). Mayo Phoenix/Scottsdale is tough. I’ve been blessed with a rare disease and was able to get to see Mayo providers.
From one desert dweller to another, stay cool out there! 🌵
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Hello @gilamonster, Welcome to Connect. Wished I could answer your question but I honestly don't know if a second opinion would have any value for you. If it provides any answers you were looking for on quality of life, less pain or other questions you might have it may have value but I'm thinking it doesn't change the treatment unless you get a different diagnosis. That's just my non medical opinion. I have idiopathic small fiber peripheral neuropathy and posted my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.
I have similar concerns at my age of 80, balance not too hot, can't walk very far due to lower back issues and forward leaning. I do exercise a lot at home on an elliptical recumbent bike along with a rowing machine. Fortunately I don't take any meds for my neuropathy since I only have the numbness and some tingling which there isn't any type of medication that helps with that.
The Foundation for Peripheral Neuropathy has some information on living well with neuropathy along with a list of alternative and complementary treatments that some people have found helpful. They also have a lot of webinar videos on their website that are great for learning more -- https://www.foundationforpn.org/living-well/.
You mentioned having PN for about 2 years. Is that when the symptoms started? Did you have any testing done when you were diagnosed - skin punch biopsy, EMG, etc?