Hello @julkun, Welcome to Connect. It looks like you were replying to the post by @ludite here - https://connect.mayoclinic.org/comment/205653/. I think the member may not be following Connect anymore as their last post was in 2019. Sorry to hear that nothing has worked to relieve your diabetic neuropathy symptoms in your feet.
Every lifestyle activity is dependent on the level of pain I feel at the time. My feet are always painful to some degree, when the pain is a 10 my activities are limited. I just can't or don't want to do anything.
Hello @julkun, Welcome to Connect. It looks like you were replying to the post by @ludite here - https://connect.mayoclinic.org/comment/205653/. I think the member may not be following Connect anymore as their last post was in 2019. Sorry to hear that nothing has worked to relieve your diabetic neuropathy symptoms in your feet.
Hello @don261, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Many of us have wasted a lot of money on suspect treatments. It falls back on each of us to do our own research before signing up for expensive treatments with no real science or clinical trials behind them. Here are a couple of references you might find helpful for evaluating treatments.
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
Are you able to share a little more about your diagnosis and any other treatments you have tried?
I wonder if any of the drug companies will bother looking for remedies for Axonal Sensory Neuropathy. Perhaps the same remedy for peripheral neuropathy patients will help ASN patients too ... ? Peggy
I wonder if any of the drug companies will bother looking for remedies for Axonal Sensory Neuropathy. Perhaps the same remedy for peripheral neuropathy patients will help ASN patients too ... ? Peggy
That’s an interesting question. I have been tentatively diagnosed with Axonal Neuropathy. There are tens of millions of us with some form of neuropathy, so that should be an incentive for drug company research into the issue.
I have read some positive information on stem cells that have come from cells from a newborn versus your traditional cells. Anyone heard or tried this type of stem cell?
Hi Jordan,
I can understand why stem cells might from a newborn might be more curative than frozen ones. Please send a link if you find anything promising.
BillU
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Every lifestyle activity is dependent on the level of pain I feel at the time. My feet are always painful to some degree, when the pain is a 10 my activities are limited. I just can't or don't want to do anything.
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1 ReactionThanks, I will check the links
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1 ReactionI went to the Giostar clinic in Chicago about 8 weeks ago spent quite a bit of money with limited to no results
I should have stated that Giostar does bone marrow stem cell therapy
agree, my neurologist said for me not to waste my money
Hello @don261, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Many of us have wasted a lot of money on suspect treatments. It falls back on each of us to do our own research before signing up for expensive treatments with no real science or clinical trials behind them. Here are a couple of references you might find helpful for evaluating treatments.
The International Society for Stem Cell Research has created a take-along PDF handbook with information to help you and your family make informed decisions about stem cell treatments.
-- https://www.closerlookatstemcells.org/patient-resources/#handbook
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
Are you able to share a little more about your diagnosis and any other treatments you have tried?
They are currently looking for volunteers for their trial. https://mailchi.mp/winsantor.com/lets-end-peripheral-neuropathy-together-941278?e=2f845ad527
I wonder if any of the drug companies will bother looking for remedies for Axonal Sensory Neuropathy. Perhaps the same remedy for peripheral neuropathy patients will help ASN patients too ... ? Peggy
That’s an interesting question. I have been tentatively diagnosed with Axonal Neuropathy. There are tens of millions of us with some form of neuropathy, so that should be an incentive for drug company research into the issue.
Hi Jordan,
I can understand why stem cells might from a newborn might be more curative than frozen ones. Please send a link if you find anything promising.
BillU