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Has anyone used MLS Laser therapy or Calmare Therapy?
You are right @helennicola idiopathic does not mean no cause, but unknown cause. A common method of action in the scientific world, especially pharmaceuticals, if the truth be known.
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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Never said “no cause”—said doctor “not smart enough or wouldn’t take the time to keep looking—there is ALWAYS a cause—FIND IT—progression “will not stop” if you don’t—you’ll HAVE to go to meds and then up the doses(which could be worse than the disease)
I have “searched” for a cause for my seizures and migraines since I was 14 years old. I am now 51. It was a good thing I didn’t know I actually was having absence seizures at the time when I started that frustrating search because it would actually put me in the car the night I’d planned my suicide when I was 17. The day I was told after what felt like a million tests, migraines, and “we’ll figure this out together,” and answer after answer being the same, “we can’t find a reason for your migraines or pain,” but I’m sure we’ll get a treatment that works. And then nothing that they gave me worked. And then my seizures hit seven years later, but in reality I had been having them all along with the migraines but nobody had told me or my mother because of assumption of lack of ability to process or understand the information. After all, we were southern and mom was “too anxious.”
So now, I had migraines and seizures (tonic clonic, full involvement.) “No cause.” No, they are idiopathic. I corrected them with the calmest voice I could muster with my clinging 5 year old son in my arms (he’d just found me on the floor flopping like a fish two days before). I guess they get stuff like that a lot in Laramie from pharmacy students. LOL
It was after recovering from my first seizure and calming my son down (and husband) that I began the task of finding therapy that would allow me to get through pharmacy school, graduate, and build a career—with an idiopathic disease. You don’t always have to know why something is to live with it and do so successfully and with your head held high.
Faithwalker, you are one amazing, courageous, impressive, motivated woman. Sometimes there just are no answers (to anything) right?! Helen
I wish I could say I was making all this crap up. Lol I’m not a hero. Just a determined person trying to figure out how to live life with what comes.
I do have an awesome hubby who I draw much inspiration and courage from since he has faced even more struggles than I have.
I think all of you on this forum who suffer(ed) so much are heroes in my book! Helen
What a “great” resilience story! Good for you! I’ll never quit looking for “my cause”(as I deal with it “best I can”)—just can’t accept that it can’t be found—in my “long term study” of my disease—people that get better always have “big time” diet changes involved in it—very little neuropathy(known) before WW2–food started getting preservatives and “fast food” took over—our bodies didn’t get the nutrients needed from food and all “kinds of breakdowns happened—including migraine increases—check out 7 System Plan on YouTube—maybe it could change your life—until we get that “pain free” body(only thru Christ-hope you know)—Power On
Hi @crisis1152 I agree the changes with lifestyle through the years can be a contributing factor; but, let’s not forget the reason there was little neuropathy prior to WW2. The population was generally thinner then because of the more physical labor required for survival. Who farms anymore with a vegetable garden using physical labor? Let’s face it with technology booming after WW2 so did Diabetes. People became less active. When we were kids it was common to play outside. What kids did we see playing outside recently before Covid-19? I guess along with technology sacrifices have to be made unless we consciously make an effort to improve our health. I knew better to do just that. I was never forced to eat foods that contained harmful ingredients or preservatives. At times I may not like cooking but I do it for the control of ingredients. I like knowing what I eat. We may not be able to control our environment completely but we can do the best we can. We do have choices. Not enough people in the past voiced their opinions to create a change with our foods in the grocery store so it continued until a few years ago. I believe people like to take the easy way out which may not be the best depending on the situation.
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
There are others besides Winsantor in phase 2+ trials for drugs that stimulate peripheral nerve growth.
* Topiramate is in a phase 2 trial for people. At least one pubmed study showed it increased small fiber nerve density. (https://clinicaltrials.gov/ct2/show/NCT02878798). One of the studies is here (https://pubmed.ncbi.nlm.nih.gov/21437113/)
* A company called Regenancy is in phase 2 trials with something called an HDAC6 inhibitor. They believe it may work for many types of neuropathy. (https://regenacy.com/#our-pipeline)
* Eli Lilly is behind a venture which believes they know the biological mechanism that our bodies use to destroy axons. They're working on inhibitors. https://www.disarmtx.com/approach/
So instead of just pain drugs, there are medications that are in human trials for nerve regrowth and (maybe) more to come.
Winsantor, Regenancy, Disarm all believe neuropathy is caused mitochondria dysfunction in nerves. There are different processes driving it (chemotherapy, HIV, diabetes and even some types of CMT) but they all seem to cause nerve destruction in a similar way.
Winsantor's drug attenuates a constraint that peripheral nerves operate under so they can produce more mitochondria.
Regenancy believes it's a mitochondrial transport issue down the nerve tissue and their compound resolves the "blockage" of this pathway. (Note that a winsantor study also noticed that their drug also improved this transport mechanism https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6029366/)
Disarm discovered how the body is executing axons. If they can attenuate this, they can stop the destruction. Google SARM1.
To me, this is all super exciting. Winsantor thinks they'll release in the US in 2023. Not sure on the others. But it feels like a sea change is coming for many neuropathy sufferers.
Imagine going to your neuro and getting a fix instead of pain medications?
happydays, great informative post, I wasn’t aware of the 4th company Topiramate. I wouldn’t be surprised if more pharma become involved once they realize the large population who suffer with this disease which finally seems to be gaining attention. I think neuropathy is similar to fibromyalgia was 20 yrs. ago when dr.’s often didn’t seem to have a clue. Helen
@happydaysareahead Dare I hope? I hadn’t heard anything about this
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