Question about therapies

Posted by crisis1152 @crisis1152, Feb 15 11:12am

Has anyone used MLS Laser therapy or Calmare Therapy?

Hello @crisis1152, There are a couple of discussions where other members have discussed laser therapy and Calmare (scrambler) therapy. @kiowajack @rpercy7 @superwife @wisfloj and @lorirenee1 may be able to share their experience with you.

Here are discussions related to the therapies:
– Laser treatment for neuropathy?: https://connect.mayoclinic.org/discussion/laser/
– Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Are you considering one over the other?

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@johnbishop

Hello @crisis1152, There are a couple of discussions where other members have discussed laser therapy and Calmare (scrambler) therapy. @kiowajack @rpercy7 @superwife @wisfloj and @lorirenee1 may be able to share their experience with you.

Here are discussions related to the therapies:
– Laser treatment for neuropathy?: https://connect.mayoclinic.org/discussion/laser/
– Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Are you considering one over the other?

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Would like to know what Mayo feels about these therapies and are they using them

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@crisis1152

Would like to know what Mayo feels about these therapies and are they using them

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@crisis1152 – I don't think Mayo Clinic uses the Multiwave Locked System (MLS) laser therapy. I've seen ads for it but I'm a little skeptical. All of the advertising says it is FDA "cleared" not approved so that's kind of a red flag for me but it's just my opinion and I've never needed or tried it. From what I've read, it's expensive, requires multiple/ongoing treatments and is not covered by insurance.

Here is a Mayo Clinic patient experience with the Calmare (scrambler) therapy and information on the device itself.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/
— Also the site with a little more information on the device: https://www.st-team.eu/

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Is this your opinion or Mayo’s—not trying to be smart either—talked to Charlene(believe that was her name) in research at Mayo for months—then scrambled “everywhere” for info about this disease—my extensive research has led me to medical field is controlled by “big pharma” on the whole and research is either “nonexistent” or “way” to slow—“functional medicine” people have given the most “reasonable” info—what we put into our bodies had to be a big part of this—now how do I correct that(still diagnosis of idiopathic—which to me means haven’t found doctor smart enough or willing to take the time to run it down)—lyrica-gabapentin-cymbalta and others will NEVER fix anything—just “mask” symptoms “at great peril”—God doesn’t mean for people to live this way—there HAS to be a way out!

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@crisis1152

Is this your opinion or Mayo’s—not trying to be smart either—talked to Charlene(believe that was her name) in research at Mayo for months—then scrambled “everywhere” for info about this disease—my extensive research has led me to medical field is controlled by “big pharma” on the whole and research is either “nonexistent” or “way” to slow—“functional medicine” people have given the most “reasonable” info—what we put into our bodies had to be a big part of this—now how do I correct that(still diagnosis of idiopathic—which to me means haven’t found doctor smart enough or willing to take the time to run it down)—lyrica-gabapentin-cymbalta and others will NEVER fix anything—just “mask” symptoms “at great peril”—God doesn’t mean for people to live this way—there HAS to be a way out!

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@crisis1152 you hit the nail right on the head. These meds can have serious side effects and were never intended (I believe anyway) to treat pain. How do we fix this so people with serious chronic pain can actually get pain meds they need? Suicide can’t be the only option

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@crisis1152

Is this your opinion or Mayo’s—not trying to be smart either—talked to Charlene(believe that was her name) in research at Mayo for months—then scrambled “everywhere” for info about this disease—my extensive research has led me to medical field is controlled by “big pharma” on the whole and research is either “nonexistent” or “way” to slow—“functional medicine” people have given the most “reasonable” info—what we put into our bodies had to be a big part of this—now how do I correct that(still diagnosis of idiopathic—which to me means haven’t found doctor smart enough or willing to take the time to run it down)—lyrica-gabapentin-cymbalta and others will NEVER fix anything—just “mask” symptoms “at great peril”—God doesn’t mean for people to live this way—there HAS to be a way out!

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@crisis11152, Like I mentioned earlier, it is just my opinion based on investigating laser therapy for my small fiber PN to find something that would help the numbness in my feet and ankles. I have learned to be very skeptical unless I see medical evidence through patient clinical trials and scientific evidence. For me, there are just too many people making big money off of the symptoms of us patients with neuropathy. I'm not a supporter of "big pharma" but there are some things that drugs help people just get through the day with their pain.

Since I know there are no drugs or topicals that will help me "fix" the numbness from neuropathy, I'm down to taking supplements I've found that have seemed to slowed or stopped the progression of my neuropathy. It is subjective on my part but it still seems like a win-win for me. My best resources for help with neuropathy have been:

– Neuropathy Commons: https://neuropathycommons.org/
– Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
– Searching for medical research information on Google Scholar: https://scholar.google.com/

REPLY
@johnbishop

@crisis11152, Like I mentioned earlier, it is just my opinion based on investigating laser therapy for my small fiber PN to find something that would help the numbness in my feet and ankles. I have learned to be very skeptical unless I see medical evidence through patient clinical trials and scientific evidence. For me, there are just too many people making big money off of the symptoms of us patients with neuropathy. I'm not a supporter of "big pharma" but there are some things that drugs help people just get through the day with their pain.

Since I know there are no drugs or topicals that will help me "fix" the numbness from neuropathy, I'm down to taking supplements I've found that have seemed to slowed or stopped the progression of my neuropathy. It is subjective on my part but it still seems like a win-win for me. My best resources for help with neuropathy have been:

– Neuropathy Commons: https://neuropathycommons.org/
– Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
– Searching for medical research information on Google Scholar: https://scholar.google.com/

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I agree John. I also remember a time that ketamine was a BIG NO, NO for anything but horses. LOL Now they are saying that ketamine is a go to over opioids. Yeah, let’s give people hallucinations and nightmares instead of pain relief.

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@faithwalker007

I agree John. I also remember a time that ketamine was a BIG NO, NO for anything but horses. LOL Now they are saying that ketamine is a go to over opioids. Yeah, let’s give people hallucinations and nightmares instead of pain relief.

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I was given ketamine for the first two days after surgery, in addition to pain meds. I didn’t have hallucinations but I did have some strange dreams.

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@johnbishop

@crisis11152, Like I mentioned earlier, it is just my opinion based on investigating laser therapy for my small fiber PN to find something that would help the numbness in my feet and ankles. I have learned to be very skeptical unless I see medical evidence through patient clinical trials and scientific evidence. For me, there are just too many people making big money off of the symptoms of us patients with neuropathy. I'm not a supporter of "big pharma" but there are some things that drugs help people just get through the day with their pain.

Since I know there are no drugs or topicals that will help me "fix" the numbness from neuropathy, I'm down to taking supplements I've found that have seemed to slowed or stopped the progression of my neuropathy. It is subjective on my part but it still seems like a win-win for me. My best resources for help with neuropathy have been:

– Neuropathy Commons: https://neuropathycommons.org/
– Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
– Searching for medical research information on Google Scholar: https://scholar.google.com/

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Thanks but these sites you posted are “grammar school” sites—a company named WinSanTor is having 3rd phase trials in Canada on a drug(pirenzepine) that is supposed to “regrow” nerves—what is Mayo doctors thoughts on this?

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@crisis1152

Thanks but these sites you posted are “grammar school” sites—a company named WinSanTor is having 3rd phase trials in Canada on a drug(pirenzepine) that is supposed to “regrow” nerves—what is Mayo doctors thoughts on this?

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@crisis1152, There is another discussion you might want to read through where members have been discussing pirenzepine and WinSanTor clinical trials. Had not seen the phase 3 clinical trial. Is it a follow-on to the phase 2 trial for treating diabetic peripheral neuropathy? A 24-Week Study of Topical Pirenzepine or Placebo in Type 2 Diabetic Patients (T2DM) With Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT04005287

I think it shows promise for those with diabetic PN. I'm just a patient member like yourself and others so cannot speak on what Mayo doctors thoughts are on pirenzepine.

Here's the discussion on pirenzepine – Anyone Heard of Pirenzepine for Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/anyone-heard-of-pirenzepine-for-small-fiber-neuropathy/

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Thanks for your info—realize your a patient like me—thought site would be more up to date on info—maybe giving research things and offering “clinical trials” and stuff like that—have actually talked to Stanley Kim myself and he had a “zoom” with Peripheral Neuropathy Success Stories” on 1/13–If drug works it “could” be for most any neuropathy(testing now is diabetic) but cause would have to be “fixed”—which is why “I go nuts” when people use the word “idiopathic”—there’s a “cause” for everyone! Find it! Find a doctor who won’t stop looking! It WON’T stop on it’s own! I’m more than a fighter(it’s getting old)—there has to be “a way out of this” and I’ll find it—you may want to join PNSS—more up to date info there and “zoom” calls with “experts” every 2 weeks

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Hi Crisis, I don’t think idiopathic means no cause rather the dr.’s could not find a cause after ruling out everything they thought could be the initial cause. I’m also not convinced that knowing what the cause was is a guaranteed method to curing it. I would think that with diabetes or vitamin deficiency those causes could be addressed and perhaps improved upon but the rest of us are left to deal with pain control until a drug is developed which can heal or reverse our nerve damage. Just my 2 cents for what that’s worth.

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