Neuropathy does improve

tony13 · 12-01-2008, 12:08 PM

Any advice on how to heal them? I have had idiopathic small fibre PN for 13years. I am still getting relapses and 5 neurologists do not know what to do including one in the US. I live in the UK. Any advice would be very much appreciated. tony13

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

armac · 01-14-2009, 02:12 PM

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

ARMAC I was uplifted by your "healing" message...physically (heavy root pulling) caused my Neuropathy since August 2007.....no pain after 4/5months...both feet,both legs,left arm,hand/fingers all very numb but no pain or any other symptoms left face some numbness, right hand gradually numbing, no pain.....Planning to try CoQ10 (ubiquinol) and Acetyl L-Carnitine....wondering if there's been any success-feedback on removing Peripheral Numbness as the only Symptom (no Pain)

armac · 01-16-2009, 11:26 AM

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

New to Neuro Talk (Dec 2008)..Inspiring to read Your "PN improvement description and your own success with it.

I'm wondering if the Supplements approach would reduce my Major Symptom..Numbness..NO Pain involved now,formerly Cervical (neck)Pain for first 5months..heavy numbness in Feet,Legs,Left Arm,Hands,Left Face, progressing...

Puts my PN in perspective when I read and consider what people are having to deal with...including Pain.

PN Physically Caused 1.5yrs ago by repetitive,Tugging Work..ie Non-diabetic,Non-disease non-Meds.,Diagnosed as Idiopathic PN..and left to get on with it (National Health Service UK)..oh,nearly forgot..was prescribed Anti-depressants....now stopped (because of side effects)

now..left with all this numbness, really bad Balance (and Fatigue from ME/CFS since childhood)...particularly exhausted at the moment......

but it is Numbness that is the real problem..unable to function normally..or work (Musician).

Can't find any info on this "Physically caused" PN..hoping the Supplements might be the way to go, first..

thanks for your Post....hope all is going well for you and that the Symptoms are still on the run......!!

Ray

JFYMAT · 01-24-2009, 04:58 AM

Hi I have dull face pain on the left side. The pain started in my left ear, when I was a smoker. The smoking made the pain gradually get worse, and the pain eventually spread to my face. I was able to still drink alcohol for a couple years, but now I can only tolerate one beer a day. If I have two drinks or more I will suffer terribly. I quit smoking three years ago for the same reason. If I even inhale one puff of smoke my face will get considerably worse within minutes. My symptoms are dull aching and or pins needles along with some itching. I have tried a few meds, but I would rather not deal with the side effects. I treat with supplements and herbs, with limited results. Anyone out there that has their symptoms made worse from smoking or drinking ?

eekgame · 02-13-2009, 03:57 PM

LizaJane Hi. I did not entirely understant your problem, but I am in bed all day because walking on my feet is so painful because S1 was damaged during a back surgery and hard telling what else. Sensory nerves are damaged to the point I have strange symptoms of cold feeling/hot burning/electrical impulse gone wild and large seeping sores oozing on the bottom of my feet. These are not real only it is how it feels. SO I get from your message that maybe I should walk anyway to keep my muscles strong in spite of the sensory insanity?

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

spkar0517 · 02-20-2009, 10:09 PM

how????? i am being prepared for a lifetime of pain

SeamsLikeStitches · 03-12-2009, 03:44 PM

I've been a part of this group for the last four years. I came here unable to walk. Now I'm walking, back to work, even taking a Yoga class three times a week! I've lost 40 pounds and plan to lose 60 more.

I have my days, and my weeks. I know that if I don't keep stress in check, it will check me and put me in pain for a week or so. I've figured out I have about a 3 day delay in my cycles. If I "splurge", and push myself, it will hit me within 3 days.

My doctors did pretty much "nothing" for me except tell me I have Small Fiber Idiopathic Peripheral Neuropathy. Ran lots of tests on me and sent me home with lots of medications that made me unable to function at work. I lost my job and was even more depressed! This group taught me what I needed to get back on my feet. (Even after I fell a few times and tore my rotator cuff and couldn't use my right arm for 3 months!)

I followed Bob's diet advice.. (Wings 42) and I take Vitamin B supplements. I eat Spinach and Salmon three times a week. I hardly ever eat red meat... I put Flax seeds into my morning smoothies and have learned to say no to a lot of things I used to love. By taking control of my own life.... I've taken control of my disease! (I'm still sad that I can't wear a pair of red high heels!) At least I can walk now... and I couldn't say that 3 years ago!

The people on this board have not only helped me pull myself up with my Neuropathy, but also from the Depression that comes with being diagnosed with a disease!

Thank you all! And for you Newbies... there is hope.. don't give up! YOU have to be your own advocate!

spsafety · 03-16-2009, 11:42 PM

Quote:

Originally Posted by LizaJane

My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.

I was reading this and I am a first time user on this site, and reading what you wrote really gives me hope, I have suffered several years, and no one could find anything to help me. and I have heard of coq10. I was curious about trying it and if it would really work. Now I will see about trying it since it has worked for you. Thanks

jsrail · 03-19-2009, 02:19 AM

We should always be careful not to expect miracle cures for anything. Unless we are doctors (with paid up malpractice premiums! lol) we should also be careful of what we are telling folks. Lizajane, as I assume you are not a professional doctor, could it be that the doctor was right after all? It seems to me that there always is that possiblity, as well as the possiblity that he was wrong. If something seems like a particular Dx, doesn't always mean it is.

Hope is a good thing, unreasonable hope is a dangerous thing.

Jay

bjsuone1 · 06-06-2009, 01:59 PM

first time on this site i am on my 2ND day with no methadone i take only 5 mg a day that seemed to work for years only slightly but every bit helps also 2400 mg neuron tin and wellbutrin. As a member of the NA years ago i was told that people got big relief from it. i can not open lizs link does she give a list of what she takes .............thanks bill

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