Living with Neuropathy - Welcome to the group

Thankyou John , yes Iv had all the tests and will try anything to help with this condition , I’m also having acupuncture too but I don’t think it’s doing much and expensive too .

Hello @7510cahill and @elained, I would like to welcome you both to Mayo Clinic Connect and thank you for posting. @7510cahill you ask a question that I'm sure a lot of us members may have. I have no medical training or background but believe the answer can be different depending on a lot of factors in our health conditions and body. For me, there is no best medication because I only have numbness with my peripheral neuropathy and no drugs help with numbness according to the Mayo neurologist who diagnosed my idiopathic small fiber PN. I'm tagging our moderator @JustinMcClanahan to see if we should move your post to the following discussion where will have much more visibility and you will meet other member discussing treatments.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis?

Hi Victoria @vilee, welcome to Mayo Clinic Connect. If you would like to seek help from Mayo Clinic, please call one of our appointment offices.

The contact information for Minnesota, Arizona and Florida can be found here
-- https://www.mayoclinic.org/appointments.

Are you able to get your doctor to give you a referral? There is a discussion that you may want to read through that might be helpful.

Groups > Visiting Mayo Clinic > Your Tips on How to Get Off to the Best Start with a New Specialist
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Here is a post in the above discussion that has some good suggestions.
-- https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

John

Hello John, I don’t know if this is beyond your scope of mentoring, but I am trying to find a starting point for coming to the Mayo Clinic for testing and a complete medical workup for the diagnosis and treatment of my Burning feet. I’ve had it for years, but only at night and it was very manageable with cool fans and some icing. It did begin to worsen over the last 2-3 years and I talked to my family practice doctor with concerns. He never did any testing and just said I had PN, there was nothing I could do about it except take Gabapentin. It gave me terrible side effects. Since the first part of January it has drastically accelerated! It is constant burning in the bottom of my feet, becoming much worse with activity! I have never seen a neurologist. I live in Colorado, but after researching the best neuropathy hospitals, the Mayo is where I want to come! I just don’t know how to begin. I have Medicare and Tricare for Life as my insurance, but I don’t know if I need a referral from a doctor in Colorado before I can come to Mayo or if the doctors at Mayo will even see me. I’ve tried calling a couple of numbers, but still don’t know how to proceed. Can you help with some contact information and/or advice on how to begin? Thank you so much. Victoria

Thank you

Cymbalta, Gabapentin, Aleve, Low Dose Naltrexone, Corticosteroids like Prednisone and Methylprednisolone. I can't take Cymbalta and Aleve anymore due to side effects, but while the lasted they were magic.

Best Pain Medication

Hi, @7510cahill - you are looking for the best pain medication for pain associated with your neuropathy, correct? You mentioned baclofen, often used for muscle spasms, was recommended. What other medications have you tried thus far?

Well I have had neuropothy for 20 years. Started with a little numbness in my feet. It has progressed over the years where the numbness has traveled up my leg. In the past 8 months my neuropothy has gone balistic where the numbness has progressed, my balance is horrible and I have lost muscle. Eight months ago I was skiing and biking and very active. Not now. I have little pain. I have seen 3 neurologists. None are hopeful. I just had a laminectomy decompression surgery 10 days ago. Have not noticed any improvement. Any suggestions? I'm devestated.

Dear Eric,

I didn't even notice any symptoms, until I was diagnosed with Profound Peripheral Neuropathy. I discounted my stumbling and slowness as 'being out of shape'. I found it harder and harder to walk any distance and up hills.

I didn't have any particular pain with the neuropathy in my feet and legs. The diagnosis was made 9 years ago. I used to ski,, ride a bike, hike, I wasn't an athlete but I did lots of fun things.

Now I have leg braces and walk with a walker. And I have many neuropathies in other parts of my body. The Small Fiber Neuropathy is very painful and I take Gabapentin for it.

No cause for my neuropathies has been established through testing (and I've had ALL the tests several times). My Immunologist believes that my own Immune System mistakenly attacks my own body, damaging the nerves is various parts.

When I had sciatica recently (2006) and it was unbelievably painful, I had a laminectomy and it stopped the sciatica completely.

It is hard to be so disabled,, and to have no cure or even treatment to slow down the progress of the disease.

Regards, ElaineD