Thank you to everyone who reported the scammer. The account has been deleted. I appreciate your help in keeping Mayo Clinic spam-free and safe for all.
@stanstory these were links from the Stem Cell Therapy for Neuropathy discussion that may hold some promise but I don't know of any clinical trials that have been done specifically for stem cell injections other than for diabetic neuropathy. I'm sure there are a lot of small clinics doing their own thing and not approved by the FDA so you really have to do your own research.
I am so skeptical of all these treatments. None are covered by insurance and my neurologists only want me to follow treatments that have some real track record results. So many of us are vulnerable, looking for a cure. We can fall prey to treatments that in the long run, just make the doctors money.
I am so skeptical of all these treatments. None are covered by insurance and my neurologists only want me to follow treatments that have some real track record results. So many of us are vulnerable, looking for a cure. We can fall prey to treatments that in the long run, just make the doctors money.
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
I have had CIPN since near the end of chemo treatment last July. I was wearing braces for drop foot and using a walker. I now use a cane when going out and can get around the house without one.
I have tried acupuncture but did nothing for me. I am on Duloxetine and Gabapenten for pain management which is working for the most part.
I recently started a mega vitamin called Neurovite. It’s on Amazon, kind of expensive.
I have seen steady improvement since the beginning of my neuropathy. My balance is much better.
It’s a wait and see, try everything you can and try to stay positive. Good luck.
I have had CIPN since near the end of chemo treatment last July. I was wearing braces for drop foot and using a walker. I now use a cane when going out and can get around the house without one.
I have tried acupuncture but did nothing for me. I am on Duloxetine and Gabapenten for pain management which is working for the most part.
I recently started a mega vitamin called Neurovite. It’s on Amazon, kind of expensive.
I have seen steady improvement since the beginning of my neuropathy. My balance is much better.
It’s a wait and see, try everything you can and try to stay positive. Good luck.
I have had CIPN since near the end of chemo treatment last July. I was wearing braces for drop foot and using a walker. I now use a cane when going out and can get around the house without one.
I have tried acupuncture but did nothing for me. I am on Duloxetine and Gabapenten for pain management which is working for the most part.
I recently started a mega vitamin called Neurovite. It’s on Amazon, kind of expensive.
I have seen steady improvement since the beginning of my neuropathy. My balance is much better.
It’s a wait and see, try everything you can and try to stay positive. Good luck.
Hello @bendeb, I would like to add my welcome to Connect along with @colleenyoung and others. You may also be interested in reading what others have shared helps them with their neuropathy symptoms in the following discussion:
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
I received a notification from the Foundation fir Peripheral Neuropathy concerning a study that requires patients with diagnosed Chemotherapy induced PN. For anyone interested, the link is https://collinge.org/cipn-study/
Another cause of neuropathy is the autoimmune disease of multiple sclerosis (MS) which I note is missing in your listing of causes of neuropathy. I am a 3+ year survivor of Stage IV ESCC. I am also a 30+ year survivor of relapsing/remitting MS. I was treated with a agressive radiotherapy regimen and FOLFOX chemotherapy. The oxyplatin exacerbated my MS neuropathy and I was changed to a FOLFIRI regimen. I take baclofen to manage muscle stiffness/rigidity, gabapentin for pain and valium for vertigo. If the pain becomes particularly bothersome, I take 5mg b.i.d. I find walking, stationary biking and stretching to be helpful as well. I also take a high quality fish oil supplement and Vita B12 daily. You should also speak with your primary care provider for further assistance with treatments for your neuropathy issues. While I am a bit of a skeptic, some fellow patients at my treatment center have told me that chiropractic therapy has also been helpful.
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Thank you to everyone who reported the scammer. The account has been deleted. I appreciate your help in keeping Mayo Clinic spam-free and safe for all.
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3 ReactionsI am so skeptical of all these treatments. None are covered by insurance and my neurologists only want me to follow treatments that have some real track record results. So many of us are vulnerable, looking for a cure. We can fall prey to treatments that in the long run, just make the doctors money.
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1 ReactionI am also skeptical of treatments that claim to be a cure for neuropathy. Here are some links you might find helpful.
Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/
FDA's Health Fraud Page
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm
NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions
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1 ReactionI have had CIPN since near the end of chemo treatment last July. I was wearing braces for drop foot and using a walker. I now use a cane when going out and can get around the house without one.
I have tried acupuncture but did nothing for me. I am on Duloxetine and Gabapenten for pain management which is working for the most part.
I recently started a mega vitamin called Neurovite. It’s on Amazon, kind of expensive.
I have seen steady improvement since the beginning of my neuropathy. My balance is much better.
It’s a wait and see, try everything you can and try to stay positive. Good luck.
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Like -
Helpful -
Hug
1 ReactionBendeb, what type of chemo for what type of cancer did you have?
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1 ReactionHello @bendeb, I would like to add my welcome to Connect along with @colleenyoung and others. You may also be interested in reading what others have shared helps them with their neuropathy symptoms in the following discussion:
Member Neuropathy Journey Stories: What's Yours? -- https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
I have Ovarian Cancer, in remission.
Taxol and Carboplatin are the usual treatment.
As soon as you get any symptoms of neuropathy, the dr will usually decrease the dosage.
Bendeb, I hope you'll also join the discussions in the Gynecologic Cancers group here: https://connect.mayoclinic.org/group/gynecologic-cancer/
It sounds like you have experience that other women new to ovarian cancer would benefit from.
I received a notification from the Foundation fir Peripheral Neuropathy concerning a study that requires patients with diagnosed Chemotherapy induced PN. For anyone interested, the link is https://collinge.org/cipn-study/
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Helpful -
Hug
3 ReactionsAnother cause of neuropathy is the autoimmune disease of multiple sclerosis (MS) which I note is missing in your listing of causes of neuropathy. I am a 3+ year survivor of Stage IV ESCC. I am also a 30+ year survivor of relapsing/remitting MS. I was treated with a agressive radiotherapy regimen and FOLFOX chemotherapy. The oxyplatin exacerbated my MS neuropathy and I was changed to a FOLFIRI regimen. I take baclofen to manage muscle stiffness/rigidity, gabapentin for pain and valium for vertigo. If the pain becomes particularly bothersome, I take 5mg b.i.d. I find walking, stationary biking and stretching to be helpful as well. I also take a high quality fish oil supplement and Vita B12 daily. You should also speak with your primary care provider for further assistance with treatments for your neuropathy issues. While I am a bit of a skeptic, some fellow patients at my treatment center have told me that chiropractic therapy has also been helpful.
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Like -
Helpful -
Hug
1 Reaction