1. < Neuropathy

Regional neuropathy centers?

Posted by chawk @chawk, 4 days ago

I was diagnosed with idiopathic peripheral neuropathy about three years ago. In that time, I've been tested up and down, conferred with my GP, a neurologist, and several podiatrists. I've done physical therapy with several practitioners, saw an acupuncturist for about a year, tried red light therapy, and dropped numerous pills, including gabapentin and alphalipoic acid. I've also enriched a number of shoe manufacturers and insole designers. I'm sure many of you have gone many of the same routes, with varying degrees of success. My question: Do you know of clinics or medical offices where practitioners from a variety of disciplines work under one roof and focus on neuropathy? I doubt that the people who have treated me have conferred with one another. I live in California, and I'd put up with the 90-minute drive to LA if I could find such a place. I'm wondering if such places exist anywhere.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | 4 days ago

The only one that I know about that is not one of those what I would call fly by night, hocus pocus neuropathy treatment centers is the Loma Linda Neuropathic Therapy Center - https://lluh.org/services/neuropathic-therapy-center. There are actually a couple of discussions from members about the Loma Linda hospital:

-- My Experience with Neuropathic Therapy Center at Loma Linda University:
https://connect.mayoclinic.org/discussion/my-experience-with-neuropathic-therapy-center-at-loma-linda-university/
-- Nerve pain treatment with INF - Anyone tried this?:
https://connect.mayoclinic.org/discussion/nerve-treatment-anyone-tried/

REPLY
1 reply
chawk | @chawk | 3 days ago
In reply to @johnbishop "The only one that I know about that is not one of those what I would..." + (show)
@johnbishop

The only one that I know about that is not one of those what I would call fly by night, hocus pocus neuropathy treatment centers is the Loma Linda Neuropathic Therapy Center - https://lluh.org/services/neuropathic-therapy-center. There are actually a couple of discussions from members about the Loma Linda hospital:

-- My Experience with Neuropathic Therapy Center at Loma Linda University:
https://connect.mayoclinic.org/discussion/my-experience-with-neuropathic-therapy-center-at-loma-linda-university/
-- Nerve pain treatment with INF - Anyone tried this?:
https://connect.mayoclinic.org/discussion/nerve-treatment-anyone-tried/

Jump to this post

I hadn't heard about the program at Loma Linda, and it's heartening that it helped a reader. Thanks!

REPLY
mikead63 | @mikead63 | 1 day ago

Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value, no hope, no recommendations, nothing. Mayo Clinic in Rochester responded to my request for an appointment with a form letter and no interest in seeing me. My regular Internist who also specializes in geriatric medicine and has been rewarded numerous "Top Doc" awards had no words of wisdom. On and on and on. I sincerely sympathize with those of you who have been in this situation for years while I am just starting out on this journey of hopelessness. I live in the Minneapolis area and wish there was a local group suffering with the same diagnosis that gets together to discuss our similar problems. If not, I may start one.

REPLY
3 replies
fala | @fala | 1 day ago
In reply to @mikead63 "Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value,..." + (show)
@mikead63

Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value, no hope, no recommendations, nothing. Mayo Clinic in Rochester responded to my request for an appointment with a form letter and no interest in seeing me. My regular Internist who also specializes in geriatric medicine and has been rewarded numerous "Top Doc" awards had no words of wisdom. On and on and on. I sincerely sympathize with those of you who have been in this situation for years while I am just starting out on this journey of hopelessness. I live in the Minneapolis area and wish there was a local group suffering with the same diagnosis that gets together to discuss our similar problems. If not, I may start one.

Jump to this post

Start one!
All of us who suffer from this debilitating disease wish there were more facilities, more answers, more attention to PN. As I follow this welcomed site, there are more and more individuals that have finally realized that they are victims of this miserable disease. Almost all of us were misdiagnosed. It took me years, even a failed surgery to finally find out that my pain was PN.!! This site not only tells us that we are NOT ALONE, but mentions different efforts in the process to get relief. A BIG thing to remember is that there is no such thing as "One size fits all". Keep trying, keep reading, as there are many helpful posts here! Best Wishes!

REPLY
allegheny | @allegheny | 8 hours ago
In reply to @mikead63 "Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value,..." + (show)
@mikead63

Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value, no hope, no recommendations, nothing. Mayo Clinic in Rochester responded to my request for an appointment with a form letter and no interest in seeing me. My regular Internist who also specializes in geriatric medicine and has been rewarded numerous "Top Doc" awards had no words of wisdom. On and on and on. I sincerely sympathize with those of you who have been in this situation for years while I am just starting out on this journey of hopelessness. I live in the Minneapolis area and wish there was a local group suffering with the same diagnosis that gets together to discuss our similar problems. If not, I may start one.

Jump to this post

Hi Mike, your journey with idiopathic neuropathy sounds idetical to mine. After 8 yrs of being diagnosed I nor neurologists have any answers. Up your Gabapentin, NO! I am on 300 mg a day and will only increase if I Feel necessary I have been through pt many times, accupuncture, red light therapy, stand on vibration machine, which I think MAY help, I go to gym 3-4 days a week ( which I know helps) take R Alpha Lipoic Acid, Bentofitamine (sp?) magnesium, turmeric, B12, Biotin. Do all these supplements help? I dont know, however afraid to stop. I have dismissed by 3 neurologists, stating if you need another appy just call. Another Dr told me there is nothing I can do for you. My GP is my Saviour, she helps, has suggestions on care. Had MRI of brain and entire spine, all looked go according to neurosurgeon. SOOO bottom line, take supplements, EXERCISE, gym and swimming in summer, even though I live in Fl. eat whole foods, and watch for scams. Read Mayo Connect daily, if possible. I have jearned more on this site than any Neurologis, my opinion, this disease is much too complicated, all neuropothies are different, therefore hard to treat. My dream is to have a doctor that SPECIALIZES in neuropathy ONLY! No such Dr. exists. Oh well, best wishes to all

REPLY
1 reply
chrisanon | @chrisanon | 7 hours ago
In reply to @mikead63 "Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value,..." + (show)
@mikead63

Also diagnosed, recently, with idiopathic peripheral neuropathy. After the diagnosis my neurologist provided nothing of value, no hope, no recommendations, nothing. Mayo Clinic in Rochester responded to my request for an appointment with a form letter and no interest in seeing me. My regular Internist who also specializes in geriatric medicine and has been rewarded numerous "Top Doc" awards had no words of wisdom. On and on and on. I sincerely sympathize with those of you who have been in this situation for years while I am just starting out on this journey of hopelessness. I live in the Minneapolis area and wish there was a local group suffering with the same diagnosis that gets together to discuss our similar problems. If not, I may start one.

Jump to this post

I am learning that ALOT of drugs of all types are implicated in drug induced problems. Type in drugs that cause ( condition / ie: peripheal neuropathy - so many come up, tmi to paste. ) My rheum did some tests and PPI came up as causing drug induced Lupus, so did my hypertension drugs and out of 7 I was on, 4- yes 4 (maybe 6) were included in the list! Check the drugs you are on and see if you can get into an alternative. Drugs rarely get to the root of the problem, as we all know. They only mask symptoms. So they keep pushing more meds to cover more symptoms and on it goes..2 years ago I felt I was burning inside out. Pushed me to dig. I also have LIchen Planus, Oral LP Esopahgeal LP (ELP) and yep.. drugs are known to cause that too, but did the docs ever say anything about it or warn me? NOPE!!!! They just treat "the condition." w more meds. Eastern Med has more answers- Traditional Chinese Medicine.. 5 element theory. Acupuncture, herbs, massage to get the lymph going. I need to get into it once again. It all makes sense.

REPLY
mikead63 | @mikead63 | 7 hours ago
In reply to @allegheny "Hi Mike, your journey with idiopathic neuropathy sounds idetical to mine. After 8 yrs of being..." + (show)
@allegheny

Hi Mike, your journey with idiopathic neuropathy sounds idetical to mine. After 8 yrs of being diagnosed I nor neurologists have any answers. Up your Gabapentin, NO! I am on 300 mg a day and will only increase if I Feel necessary I have been through pt many times, accupuncture, red light therapy, stand on vibration machine, which I think MAY help, I go to gym 3-4 days a week ( which I know helps) take R Alpha Lipoic Acid, Bentofitamine (sp?) magnesium, turmeric, B12, Biotin. Do all these supplements help? I dont know, however afraid to stop. I have dismissed by 3 neurologists, stating if you need another appy just call. Another Dr told me there is nothing I can do for you. My GP is my Saviour, she helps, has suggestions on care. Had MRI of brain and entire spine, all looked go according to neurosurgeon. SOOO bottom line, take supplements, EXERCISE, gym and swimming in summer, even though I live in Fl. eat whole foods, and watch for scams. Read Mayo Connect daily, if possible. I have jearned more on this site than any Neurologis, my opinion, this disease is much too complicated, all neuropothies are different, therefore hard to treat. My dream is to have a doctor that SPECIALIZES in neuropathy ONLY! No such Dr. exists. Oh well, best wishes to all

Jump to this post

@allegheny Thank you for you reply! I also work out 3-4 days per week and agree that it helps, both mentally and physically! The best I feel is when I can walk outside 2-3 miles a day in the fresh air. Living primarily in Minnesota that isn't convenient or practical in the winter. I do travel to warm spots for periods of time and can't wait to get outside and walk! I'm on 300 mg Gabapentin and take it before bedtime and without it my feet will burn and ache at night. I also take ALA but you mention R ALA. Is that supposed to be better? I need to check that out.
My GP is also very good, as she was the one who initially recommended the Gapapentin that has helped. Trouble is in today's world is that every Doc is on the clock and so many rush you along and don't seem to have much empathy. Fortunately I have a few specialists that truly care (My urologist, gastroenterologist, cardiologist, and ortho/spine specialist). Neurologist just went through the motions and Mayo Clinic has no interest in seeing another patient with idiopathic peripheral neuropathy! Guess what! I feel better now and plan to get in a good workout followed by watching my 10 year old twin grandsons play an important hockey game today! Thanks for your assistance!!

REPLY
Please sign in or register to post a reply.