Been struggling with PN for years and my neurologist has doe nothing to help find the causes other than to give me Gabipenten and Pregablin which didn’t work. Tried Yale and earliest appointment was six months away. My PN is
up past my ankles and in my hands, painful and scary. Noticed many folks in this group have had significant diagnosis of their PN than I have been able to get. How do I find the folks that will put in the effort to discover and give me the care this needs on a timely basis? I’m extremely uncomfortable and at my wits end not knowing where to turn?
Hello @intlguyct, Welcome to Connect. I wished I had some good answers for you. I know it's a struggle dealing with neuropathy whether you know the cause or not and it can be painful and scary. I also have idiopathic neuropathy but fortunate for me I only have the numbness and some minor tingling. The reality is that knowing the cause may or may not be helpful in treating the symptoms. My best advice I have to offer is to learn as much as you can about your condition and what treatment options are available that might provide some relief. Two of the best sites to learn more that have helped me are:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
Not sure if this is helpful but here goes.
1. Had my neck cracked not a problem usually. This time I was paralysed. MRI showed very old injury maybe whiplash from car accident. Caused a spur to grow from c6 into my spinal cord.
2. Creating stress leading to shingles ear,eye,mouth ,body, but the real kicker from a professor seems to think down my spinal cord as it was in my head everywhere … he called it Neuro autoimmune
3. Garlic, onion, corn, mushrooms lots more sent me straight to the bathroom.
apparently gut and spinal cord develop at same time
4. Had spur removed from my spinal cord, cage put over c567
5 gut is better. Neck is crap but at least I won’t end up in a wheelchair if I was on a kids ride, fell over or car accident.
6 I have lightening twitches in my legs, if I scratch or rub my legs it feels like a horse has kicked me. My toes feel like a spider has bit one occasionally. Hands and feet freezing.
7. Lost most of my hair .. grew back but it is starting again.
8. 17,000 ectopic heart beats per day … most people get one a year. Inflammation around my heart and meds are not working
9. Can you imagine the amount of medication over five years. Lyrica, Methotrexate, mycophenloate. Pale is .
10. Lupus eating holes in my hip so now off for a hip replacement
How on earth do we deal with this for years to come.
I am truly hoping someone will have some guidence , and for all those going through any of this my heart goes out to you
The way I cope ….. I have lost most of my family to suicude … so I am on call To help families and first responders after suicide, it is so very rewarding.
I have grandchildren that come running up for a biggest hug for Grammy. I would just like some light at the end if the tunnel
Take care everyone
Thanks so much for sharing this information. Honestly, just knowing that there are others out there who have doctors who’ve heard of it and even some people who have benefited from it makes me feel better. When I first brought the idea to my doctors, I felt like they thought I was crazy. And even now the attitude hasn’t been all that supportive.
I do think the neurologist I connected with would be willing to order it if/when I’m ready. One thing giving me pause were the potential side effects, so I feel better knowing a little of what you did to manage. Thanks also for the resources!
Whether it’s treatable or not is up to the individual who’s being treated but doubtful it’s curable since we cannot regrow peripheral nerves. Shame we cannot develop alternate pathways for nerves like our blood supply network does when it encounters a road block.
@gba - When I first read your post, I immediately thought "no and no"...but then, it's more than that. I always enjoy posts by Chris Trout who has the ability to look at things from experience and various perspectives. The stem cell point is something that I feel has to be given a lot of consideration. Personally....I doubt anything can be curable until it is first treatable. As it stands, only about 8% of us have PN. Covid, cancer, heart disease and other things that can take our lives have taken center stage. And, think about this, when you tell someone, you have peripheral neuropathy, most people never heard of it and if they did, they got it wrong. First, figure out how to regenerate never damage and through treatment, you might just find the cure. So, I will revise my initial reaction to: Hopeful and possible. Thanks for bringing this up! Ed
I agree that it would be great to have someone figure out how to regenerate the damage. I have been using a CBD oil that is definitely making my legs feel better, my arthritis too; it is from Boulder, CO; called Moon Mother. Hope this will help others.
Do you mean is neuropathy curable? In theory, if you can identify the root cause and the root cause is treatable, and can be treated before damage is done to the nerves…I suppose it could be curable, i.e. low B12 levels that cause neuropathy can be addressed.
But more than 30% of small fiber neuropathies (which is what I have) have no known cause. And even if we suspect the cause, there’s not a cure for my underlying conditions…
Which to me, brings it back to “treatable,” at least with the neuropathy I have.
I can't talk about other people with Neuropathy but two different Neuroopathy doctors suggested that I use Vitamin B12 daily and Alpha Lipoic acid twice daily. Both supplements really seem to help the tingling in my feet and the pain has subsided. Jack
I can't talk about other people with Neuropathy but two different Neuroopathy doctors suggested that I use Vitamin B12 daily and Alpha Lipoic acid twice daily. Both supplements really seem to help the tingling in my feet and the pain has subsided. Jack
I can't talk about other people with Neuropathy but two different Neuroopathy doctors suggested that I use Vitamin B12 daily and Alpha Lipoic acid twice daily. Both supplements really seem to help the tingling in my feet and the pain has subsided. Jack
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Hello @intlguyct, Welcome to Connect. I wished I had some good answers for you. I know it's a struggle dealing with neuropathy whether you know the cause or not and it can be painful and scary. I also have idiopathic neuropathy but fortunate for me I only have the numbness and some minor tingling. The reality is that knowing the cause may or may not be helpful in treating the symptoms. My best advice I have to offer is to learn as much as you can about your condition and what treatment options are available that might provide some relief. Two of the best sites to learn more that have helped me are:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
I shared my neuropathy journey in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.
You mentioned that the gabapentin and pregabalin didn't work. Did your neurologist offer any other treatments or suggestions to help with the pain?
Not sure if this is helpful but here goes.
1. Had my neck cracked not a problem usually. This time I was paralysed. MRI showed very old injury maybe whiplash from car accident. Caused a spur to grow from c6 into my spinal cord.
2. Creating stress leading to shingles ear,eye,mouth ,body, but the real kicker from a professor seems to think down my spinal cord as it was in my head everywhere … he called it Neuro autoimmune
3. Garlic, onion, corn, mushrooms lots more sent me straight to the bathroom.
apparently gut and spinal cord develop at same time
4. Had spur removed from my spinal cord, cage put over c567
5 gut is better. Neck is crap but at least I won’t end up in a wheelchair if I was on a kids ride, fell over or car accident.
6 I have lightening twitches in my legs, if I scratch or rub my legs it feels like a horse has kicked me. My toes feel like a spider has bit one occasionally. Hands and feet freezing.
7. Lost most of my hair .. grew back but it is starting again.
8. 17,000 ectopic heart beats per day … most people get one a year. Inflammation around my heart and meds are not working
9. Can you imagine the amount of medication over five years. Lyrica, Methotrexate, mycophenloate. Pale is .
10. Lupus eating holes in my hip so now off for a hip replacement
How on earth do we deal with this for years to come.
I am truly hoping someone will have some guidence , and for all those going through any of this my heart goes out to you
The way I cope ….. I have lost most of my family to suicude … so I am on call To help families and first responders after suicide, it is so very rewarding.
I have grandchildren that come running up for a biggest hug for Grammy. I would just like some light at the end if the tunnel
Take care everyone
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9 ReactionsYou’re welcome. Let us know how things evolve.
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2 ReactionsWhether it’s treatable or not is up to the individual who’s being treated but doubtful it’s curable since we cannot regrow peripheral nerves. Shame we cannot develop alternate pathways for nerves like our blood supply network does when it encounters a road block.
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6 ReactionsI agree that it would be great to have someone figure out how to regenerate the damage. I have been using a CBD oil that is definitely making my legs feel better, my arthritis too; it is from Boulder, CO; called Moon Mother. Hope this will help others.
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I can't talk about other people with Neuropathy but two different Neuroopathy doctors suggested that I use Vitamin B12 daily and Alpha Lipoic acid twice daily. Both supplements really seem to help the tingling in my feet and the pain has subsided. Jack
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2 ReactionsI can only hope that the suggestions I put out there will help the people like me and you who have Neuropathy.
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1 ReactionWhat dosage of each do you take?