Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

@lorettogibbons

Hello I'm on duloxetine so you think I should change and it will work for the itching it's a nightmare all over my body and scalp and my eyes are also very dry,thanks alot 😊xxx

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Do you feel nausea taking it? I do

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@seanmacbeth

Wanting to connect with those diagnosed with non-diabetic idiopathic neuropathy, multi sensory motor neuropathy. Have tried Senexas treatment, cell signaling using cups attached to feet and lower legs, sending electric pulses to damaged nerves, with no success. Now considering laser therapy but hesitating because of high cost and no insurance coverage. Much better success rate according to their patient testimonials but cautious because of trust since everywhere new treatments are appearing everywhere. They want around $2500 for 6 weeks of laser therapy, 3 times weekly. I declined nutrition and purchase of machine for home treatment, preferring to see if laser works first.

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I have had 15 low light laser treatments and cannot say I’ve improved at all

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@bettyg81pain

I have had 15 low light laser treatments and cannot say I’ve improved at all

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Thank you. That's what I'm looking for: comments from those that have tried it. Senexas did nothing for me but insurance covered it, like most things that don't work, but laser is expensive and Medicare won't cover. I'm trying to get an exception now but doubt it will work.

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@dbeshears1

I like your mindset on PT. I think maintaining is a great thing, or slowing the regression of our PN. I don’t want to stop it to see if I get worse. I see PT as a supervised stretching/exercise program that I’m otherwise not well qualified to do on my own.

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Deb - I go to PT 2 days a week and one other day, I do about 5 of the balance exercises at home. I'm the same, if I don't go under supervision, I tend to slack off on exercising. June to Sept, I go one day a week and pick up on exercising at home more often and in nice weather, tend to walk more. Be well and keep moving.

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I have neuropathy. It is SLOWLY getting better. PT was a big help. I also go to the gym a lot and push myself.

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Hi maybe I was commicationing to the wrong group. I don't know were to begin however there are problems and concerns about my struggles with sweating constantly wondering what was going on with me. PCP had no clue what was going on. I thought that I was going through the change at this late stage of my life. People looked at me like I was crazy. So I suffered in silence and disillusion. Blood work done no diabetes thyroid a little weak cholesterol is a little high. Numbness every where the list goes on. Eye problems, experiencing hair loss, appetite gone, short term memory now, tired of talking to these so call Psy doctors ugh don't know what to do. Psy Meds did a number on me , no family, no friends they're dead or moved away. Hope trying to keep it alive.

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@seanmacbeth

Thank you. That's what I'm looking for: comments from those that have tried it. Senexas did nothing for me but insurance covered it, like most things that don't work, but laser is expensive and Medicare won't cover. I'm trying to get an exception now but doubt it will work.

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I was going to try the Boston Scientific - sounds like they have an 80% good experience>>>
I did low light lazer and it did not work - took 15 sessions. Guess we have to try everything that we hear about and just hope something helps. What all are you taking? I'm just so glad we have a support site that we can bounce ideas off of each other-my friends, I am sure, are tired of my problems!!

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@bettyg81pain

I have had 15 low light laser treatments and cannot say I’ve improved at all

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I go to PT twice every week, which Medicare covers. My therapist is also a myokinesthetist and her techniques have been very helpful. I have also had 12 treatments of deep-tissue laser therapy and they also have helped with pain, tingling, and numbness; however, these are an out-of-pocket cost. Nothing I have tried works for my balance issues. I am reluctantly proceeding with having a device implanted which connects with the spinal nerve and is supposed to help with pain but not with imbalance. If anyone has had one of these, I'd love to hear if it is a procedure that you would recommend.

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@erichendrix

Got CIPN five years ago. I may now have some other type of neuropathy in addition to CIPN, possibly enteric neuropathy (GI tract). Started getting foot drop a few months ago, now am getting hand drop. I am in head to toe distress all day until I can get to sleep. Doing what I can with limited resources but my condition seems to be rapidly deteriorating. Looking for a courage pill or a nervous system transplant (🤒). Details are in my posts.

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Do Mayo Clinic physicians read these posts?

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@bjk3

I go to PT twice every week, which Medicare covers. My therapist is also a myokinesthetist and her techniques have been very helpful. I have also had 12 treatments of deep-tissue laser therapy and they also have helped with pain, tingling, and numbness; however, these are an out-of-pocket cost. Nothing I have tried works for my balance issues. I am reluctantly proceeding with having a device implanted which connects with the spinal nerve and is supposed to help with pain but not with imbalance. If anyone has had one of these, I'd love to hear if it is a procedure that you would recommend.

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I am paying out of pocket too!! Balance is terrible-am going to work on that. Let's keep in touch as I am being scheduled for the implant also-pain specialist likes using Boston Scientific. My friend, who was a nurse, is really frightened for me to do it because if it fails, there can be bad consequences to live with forever; but, I don't see but two choices, live with the pain or take the risk. Are you taking gabapentin or progabalin and what mg and amount per day and when-I really am having trouble with brain fog if I take it in the morning.

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