Idiopathic Progressive Polyneuropathy: How to find a specialist?

Posted by oldshep @oldshep, Wed, Feb 12 12:43pm

I was diagnosed about 2+ years ago. I had local testing, then a visit to Johns Hopkins. They cannot find the root cause and I continue to go downhill. Has anyone had a similar problem or does anyone know where you go after no one can diagnose and find the root cause?

Hello Larry mayo clinic carries a number one title so I’ll be tempted to go there when John Hopkins cant figure it out I’m so sorry you’re going through this

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Hi Larry
I was diagnosed one year ago with Small Fiber Polyneuropathy with B12 deficiency. My symptoms presented 2 1/2 years prior with a slow progression until last year and had been misdiagnosed all along. When discovered with B12 deficiency my Neurologist immediately began aggressive dosing of B12. I'm sad to say, for me, finding the root cause has not amounted to any difference in my neuropathy progression. I continue to go down hill regardless…apparently the damage was done and irreversible.

For you sir, my hope is that you persevere and perhaps try Mayo Clinic. Have you had a complete work up including genetic testing, spinal tap, abundance of blood draws?
Rachel

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@oldshep I'm pretty sure that if tests haven't nailed down the cause of your neuropathy, the diagnosis is idiopathic peripheral neuropathy. At that point, it's pretty much treat the symptoms. My neuropathy could have developed as a result of going up and down ladders and scaffolding, painting houses and other buildings. But there's no way to know that.

Jim

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I have same idiopathic neuropathy and no reason why I know how frustrating it can be.
Hang there you are not alone in your pain,

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I have been treated for the past 4 years at University of California Davis. After all this time they finally said that there is nothing more they can do. I'm taking 3,600 mg of Gabapentin and 90 mg of Cymbalta on a daily basis and still having pain at night… I think we just live with it?

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@tfarrell

I have been treated for the past 4 years at University of California Davis. After all this time they finally said that there is nothing more they can do. I'm taking 3,600 mg of Gabapentin and 90 mg of Cymbalta on a daily basis and still having pain at night… I think we just live with it?

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Well that’s a bummer @tfarrell, hang in there right???

Liked by Lisa Lucier

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Are any of you SFN people trying the John Bishop/Facebook supplement program? He claims success with it.

I've been on it a while, very severe pain levels like you guys plus numbness moving from my feet up my legs and around my lips, left side of the face and inside my mouth, and then I started feeling better. My feet were still spotty with numbness but not nearly as bad, the burning split down my tongue I forgot about, and the nails in the ends of my fingers and numbness on the ends of my fingers I forgot about.

Recently, I tried to return to a vegan diet I was on 12 years ago. However, I had learned some time ago that I could no longer eat beans which was a mainstay of that diet and I had also stopped eating glutin. Since the supplementation program (forgot what it is called) my gut cramping and pain had cleared up. My bowels were improving although not normal. Encouraged, I began eating an Ancient Grain bread with no ill effects. In fact, since the supplementation program, my knuckles have felt oiled and they usually get sore when I eat glutin. Again, no return of swollen joints. Is it all the Hemp oil and fish oil?

Still encouraged and trying to return to a strict vegan diet, I began eating some bread not made from ancient grains and I also ate a can of beans. Big mistake. Terrible gut pain and I've got nails back in the ends of my fingers. My mouth was completely numb the last 2 nights with numbness on the left side of my face. Of course, the burning skin from head to toe never left me during my improvement but the intensity did lessen. However, after my diet experimentation, it has worsened and my last 2 nights have been sleepless.

So, I think I can attribute my improvement to the Bishop/Facebook protocol and food does seem to be a variable for me in my symptoms. There is a book I've picked up by Terry Wahls, MD, who regained her health through diet. She was in a wheelchair while she researched food as medicine and now she is cycling again.

I know, if you're like me, you're damn tired of trying this and then that, especially when you're not feeling well. Yesterday, I could hardly stay out of bed but I'm back on my gluten-free and lectin-free (Dr. Steven Gundry) diet so I'll see if I can get back to where I was…feeling better and optimistic.

Good luck all.

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@jager5210

Are any of you SFN people trying the John Bishop/Facebook supplement program? He claims success with it.

I've been on it a while, very severe pain levels like you guys plus numbness moving from my feet up my legs and around my lips, left side of the face and inside my mouth, and then I started feeling better. My feet were still spotty with numbness but not nearly as bad, the burning split down my tongue I forgot about, and the nails in the ends of my fingers and numbness on the ends of my fingers I forgot about.

Recently, I tried to return to a vegan diet I was on 12 years ago. However, I had learned some time ago that I could no longer eat beans which was a mainstay of that diet and I had also stopped eating glutin. Since the supplementation program (forgot what it is called) my gut cramping and pain had cleared up. My bowels were improving although not normal. Encouraged, I began eating an Ancient Grain bread with no ill effects. In fact, since the supplementation program, my knuckles have felt oiled and they usually get sore when I eat glutin. Again, no return of swollen joints. Is it all the Hemp oil and fish oil?

Still encouraged and trying to return to a strict vegan diet, I began eating some bread not made from ancient grains and I also ate a can of beans. Big mistake. Terrible gut pain and I've got nails back in the ends of my fingers. My mouth was completely numb the last 2 nights with numbness on the left side of my face. Of course, the burning skin from head to toe never left me during my improvement but the intensity did lessen. However, after my diet experimentation, it has worsened and my last 2 nights have been sleepless.

So, I think I can attribute my improvement to the Bishop/Facebook protocol and food does seem to be a variable for me in my symptoms. There is a book I've picked up by Terry Wahls, MD, who regained her health through diet. She was in a wheelchair while she researched food as medicine and now she is cycling again.

I know, if you're like me, you're damn tired of trying this and then that, especially when you're not feeling well. Yesterday, I could hardly stay out of bed but I'm back on my gluten-free and lectin-free (Dr. Steven Gundry) diet so I'll see if I can get back to where I was…feeling better and optimistic.

Good luck all.

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@jager5210 I’m glad to hear you’re doing better. Thanks for the feedback.

Liked by rwinney

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@jager5210

Are any of you SFN people trying the John Bishop/Facebook supplement program? He claims success with it.

I've been on it a while, very severe pain levels like you guys plus numbness moving from my feet up my legs and around my lips, left side of the face and inside my mouth, and then I started feeling better. My feet were still spotty with numbness but not nearly as bad, the burning split down my tongue I forgot about, and the nails in the ends of my fingers and numbness on the ends of my fingers I forgot about.

Recently, I tried to return to a vegan diet I was on 12 years ago. However, I had learned some time ago that I could no longer eat beans which was a mainstay of that diet and I had also stopped eating glutin. Since the supplementation program (forgot what it is called) my gut cramping and pain had cleared up. My bowels were improving although not normal. Encouraged, I began eating an Ancient Grain bread with no ill effects. In fact, since the supplementation program, my knuckles have felt oiled and they usually get sore when I eat glutin. Again, no return of swollen joints. Is it all the Hemp oil and fish oil?

Still encouraged and trying to return to a strict vegan diet, I began eating some bread not made from ancient grains and I also ate a can of beans. Big mistake. Terrible gut pain and I've got nails back in the ends of my fingers. My mouth was completely numb the last 2 nights with numbness on the left side of my face. Of course, the burning skin from head to toe never left me during my improvement but the intensity did lessen. However, after my diet experimentation, it has worsened and my last 2 nights have been sleepless.

So, I think I can attribute my improvement to the Bishop/Facebook protocol and food does seem to be a variable for me in my symptoms. There is a book I've picked up by Terry Wahls, MD, who regained her health through diet. She was in a wheelchair while she researched food as medicine and now she is cycling again.

I know, if you're like me, you're damn tired of trying this and then that, especially when you're not feeling well. Yesterday, I could hardly stay out of bed but I'm back on my gluten-free and lectin-free (Dr. Steven Gundry) diet so I'll see if I can get back to where I was…feeling better and optimistic.

Good luck all.

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This is great news!!! So happy for your improvements. Yes, I use the Protocol (since last Sept) and do think it brings a layer of help to my neuropathy and overall health.

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@tfarrell

I have been treated for the past 4 years at University of California Davis. After all this time they finally said that there is nothing more they can do. I'm taking 3,600 mg of Gabapentin and 90 mg of Cymbalta on a daily basis and still having pain at night… I think we just live with it?

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Good evening @tfarrell. I am responding to your post about reaching a maximum in treatment. This community is composed of patients, caregivers and health care providers from all over the world. Our efforts are to help folks improve their quality of life by sharing our experiences in a supportive format.

Did you receive a diagnosis of neuropathy at UC Davis? Was a cause determined? Diabetes? Cancer Chemo treatments? Alcohol?
I guess I am a bit overwhelmed. Were you on Gabapentin and Cymbalta as prescribed for four years? Did you try to add something at night to prevent the pain from interrupting your sleep?

Where was your pain the worst…….hands, feet, legs, wrists, arms? I think our members might have a considerable amount of ideas for you. We will just have to know a bit more. What is most important to you at this point? What do you want to try at this time?

May you be healthy and at ease. Chris

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@johnbishop

@jager5210 I’m glad to hear you’re doing better. Thanks for the feedback.

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Hello John: I have ordered the protocol components and am beginning the ramp up with R ALA. About how long before I should expect any noticeable results for my peripheral neuropathy? I currently have feet and hands pains, burning, numbness, etc…

The question I have is if the Protocol 525 available at this time?
Thank You
Mike Strasser

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@mstrasse1

Hello John: I have ordered the protocol components and am beginning the ramp up with R ALA. About how long before I should expect any noticeable results for my peripheral neuropathy? I currently have feet and hands pains, burning, numbness, etc…

The question I have is if the Protocol 525 available at this time?
Thank You
Mike Strasser

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Hi Mike @mstrasse1, the new Protocol 525 has not started shipping yet but is close to shipping according to the Facebook group's leader. I think it might be within the next few weeks. I'm looking forward to it as it means taking fewer pills/capsules – 12/day vs ~30/Day for the same supplements. Each person is different as far as the results. For me and having only numbness in my legs just below the knees, it was about 2 months before I started noticing the numbness and felt to have regressed some to around the top of my ankles. Other group members who have posted their success have shared positive results anywhere from a few weeks to several months.

Have you tried searching the group using #theprotocolworks ? This will bring up all of the posts by members who have shared their success stories. I really hope it helps with your pain sooner than later and that you can share your experience here with us.

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@mstrasse1

Hello John: I have ordered the protocol components and am beginning the ramp up with R ALA. About how long before I should expect any noticeable results for my peripheral neuropathy? I currently have feet and hands pains, burning, numbness, etc…

The question I have is if the Protocol 525 available at this time?
Thank You
Mike Strasser

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I believe 525 will start shipping in March of this year.

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Today's update from the leader of that protocol indicates that protocol 525 is expected to start shipping from 24 February

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TO ALL WHO RESPONDED TO "IDIOPATHIC PROGRESSIVE NEUROPATHY
Thank for the inputs and helpful hints.
Many of you have classic pain and numbness with your problem. ME, I have very very little pain BUT my problem is weakness esp. in legs. I do have some foot numbness but so far, i can deal with that. IF i walk up 20 steps, I am so tired at the top, I have to rest and I workout 5 to 6 days a week. It is progressing for sure but I try exercises to help

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