Initial consultation at a Mayo Clinic
Would like to get my husband to Mayo/Rochester or Jacksonville for NP. Looking for input on how difficult it is to get an appointment on your own. I have heard they might not take you because they are so busy
Interested in more discussions like this? Go to the Neuropathy Support Group.
To those of you who live in the Northeast, I recommend the Columbia Doctors department of neurology in New York. They are part of New York-Presbyterian at 212-305-4565.
Well said. I have been on Statins for 30 years and got this hideous disease about 4 years ago. Nobody has any answers and I mean nobody. Its extremely frustrating and I'm angry about it.
I have tried everything. I have a lot of pain in my feet and finally got medical Cannabis for sleeping and I use Tramadol for the pain during the day. Hard to even get Tramadol because doctors are afraid to prescribe it. No one seems to understand this or even seem to care. Shameful!
Those of you that have had the SCS implanted- has it helped with burning feet along with the nerves in your legs? I'm 99% positive that I am going to have one implanted right away-this is not a good way to live.
Can anyone figure out what causes their neuropathy to be more painful one day than the next?
Thank you again for sharing.
After starting Statins last fall, then getting PN, then researching (web-based) and discovering Statins cause PN, I encourage my doctor to pause the Statin. Did and now the Dr. Prescribed REPATHA.
Web show no indication it caused PN.
Hoping to stop Blood Pressure med - Lisinopril - manage BP with diet, exercise and taking BP regularly. We’ll see
Again- thank you
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Hi there, yes it is more than ok to post your progress. Actually it is more than ok. It is welcomed. Good luck.
Chris (artscaping)
I’ve had PN since taking Velcade in 2019. Been on Gabapentin, Cymbalta and several supplements over the years. What worked for me is hydrotherapy. Immerse your feet in very hot water for maybe a minute, then ice water. Continue for about 30 minutes. I still have some PN but it helped immensely.
I was told that immersing feet in hot water temporarily relieves the nerve pain because it depletes the nerve cells of the neurotransmitters that serve as pain signals. But one has to be careful not to burn the skin, especially if feet are numb. I have been using 5% lidocaine patches on my feet at night instead.
Are the patches helping?
Not so much as the hot water but the change in temps…hot to cold repeatedly. When I first started it the change in temperature was more subtle. The more it did it, the more I could feel the temperature difference. That told me it was working.
I agree. None of my doctors care and there is no place to go. Mine is getting worse. I sleep a lot due to fatigue and just not being able to cope any more. I have severe arthritis on top of it. I don't want sympathy. I want to know if anyone with small fiber neuropathy has been successful in being allowed to end their life.