NeuroTalk Support Groups - Neuropathy does improve

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Neuropathy does improve (https://www.neurotalk.org/peripheral-neuropathy/43699-neuropathy-improve.html)

Quote:

Originally Posted by LizaJane (Post 517079)

jsrail: I've just read your note suggesting that maybe the doctor who said I never had neuropathy was correct. I understand the fear that hope can become a belief in miracles, but really, I'm not a miracle.

I have a real sensorimotor neuropathy, with autonomic involvement. Over the past 10 years or so there were periods of great sickness and symptoms, and periods that were better. But the trajectory, putting it all together, was slow and steady improvement.

I always felt best when I was on antibiotics for my chronic sinus infections, and many of us here noted some sort of correlation between infections and neuropathy. When my sinuses were infected, my neuropathy was worse; when I was on antibiotics, I felt more well on all parameters, including neuro.

My EMG/NCS are not as good as the test results I described in the post you responded to, but still, I am much much better.

In the end, my diagnosis is still confusing, but now there is even more hope.
I have tested positive for lyme, and markers of chronic lyme are all positive.
I have been on antibiotics since February, and I can now count 3 full weeks of wellness, including improved neuro function. I have signs of autoimmune illness, but the general thinking is that there was a trigger for the autoimmunity, and it was probably the lyme bacteria.

I can expect at least 12 months of treatment, and I'm finding it easy to tolerate while seeing a doctor who is very experienced in caring for complicated patients as well as chronic lyme.

I have no idea how many of us with "idiopathic" neuropathy have lyme, but anyone who has neuropathy should be tested for it.

I did improve, and hope it continues.

Best to all..

LizaJane, it is wonderful to hear of your improvement, and any improvement here on the forum. Neuropathy sufferers really need to hear it for that mental boost. I was tested for Lyme which proved negative, so I am still ideopathic, but I pray that what is ever wrong with me, will eventually try and straighten itself out. We all continue to look forward to more success and improvement stories here. God bless....:)

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

My neurologist laughed at me when I told her that a doctor suggested my nerves may heal. (a doctor had)

She said no, if I am lucky I will not get worse. Oh what a glass 1/2 empty person she is. :rolleyes:

New Kid & questions

Quote:

Originally Posted by flsun01 (Post 260382)

...relentlessly progressive , irreversable once established ,thats just a sampling of the prognosis of neuropathy found on most sites and unfortunantly in the mind of much of the medical profession. Little wonder that most newcomers to this forum are so traumatized by their symptoms and diagnosis. Thank goodness for the positive reporting from others on this site such as Wings and Liza. Yesterday marked my one year anniversary of this wretched disorder and I am much better. My pain has all but disappeared and my balance improved, for this I am delighted. I follow Mrs Ds regimen suggestion in the stickies faithfully. Does it help? I can only assume so , but I sure didnt get any suggestions from the Docs. And for the sake of any newcomers to this site looking for a glimmer of hope or a bit of advice concerning strange symptoms ,I shall list the following..piercing, crushing, unseen insects crawling, searing burning ,electrical shocks ,invisible rain drops , pins and needles and all around feeling lousy! So no ,you are not crazy ,and you can get better! Thanks to all....Tom

As brand new to this forum I am really pleased to find this resource. My general question to all is :Has anyone had success with the ReBuilder medical device? Been looking everwhere for up to date clinical results or anything not posted by manufacturer or affiliate sellers!

Quote:

Originally Posted by tinglytoes (Post 526283)

This search result gives 3 pages where Rebuilder was mentioned:
http://neurotalk.psychcentral.com/se...uery=Rebuilder

You'll have to click on each one, I'm afraid. There are many.
In essence some like it and for some it didn't work.
In my own opinion, I think the magnesium they put in the water bath is responsible for most of the effect.
You can do this yourself with epsom salt foot soaks. Use tepid water in a pan or tub and add 2oz to a small container, or 4 ounces in a bath tub and soak at least 1/2 hr. The bathtub will get slippery so be careful there. (without the electricity part)

I am new...and in total misery !

I am new to this site, DESPERATE for HELP !

About two yrs ago, I had a epidural nerve block near my thoracic spine for post-surgical cardiac pain. The Rx that was used was a very stong steroid called DEPO-MEDROL.

The pain MD who administered it (an anthesiologist) did not use flourscopy as I later found out he should have used...and I learned that DEPO MEDROL is by its own maker, Pharmacia, NOT to be used anywhere near the spine...without possible serious neurological complications, including ARACHNOIDITIS and extreme sensory nerve disturbance.

Over the past two yrs I have had five MRI's, none show ARACHNOIDITIS. BUT ever since this TOXIC steriod was injected near my spine, my feet first began to BURN, then my legs...now my lips, my face....the MDs and neurologists cannot find a cause other than some slowing on NCS.

The neurologists are saying I have "small sensory nerve fiber neuropathy" to "idiopathic neuropathy" to asymetical dymyleinating axonal polyneuropathy."

The BURNING in my FEET and legs has become some unbearable, I have LOST my job because I cannot keep up with the work due to this extreme pain, barely able to walk.

The MDs have thrown EVERY Rx at me...Neurontin, Lyrica, Cymbalta, Effexor ER, Keppra, Lacmital, Topamax, NORCO, fenatyl patches, Tramadol, Ultram...all have either given me a bad rash or made me so dizzy and short of breath that I have had to stop.

SO then I found this vitamin supplement on the web called NERVE SUPPORT FORMULA, with HUGE amounts of Vitamin B1 in the form of Benfotiamine, 103 mg which is 6,875% OVER the RDA and Vitamin B12 in the form of Methylcobalamin 1000 mcg which is 16, 6666% over the RDA in ONE CAPSULE ALONE. And the manufacturer recommends FOUR a day of these capsules to "heal neuropathy."

Well, I started taking four at first, and they seemed to help for about six months, but then made the BURNING PAIN WORSE !!

So I finally begged my neuro for SOMETHING, and she now has me on 3 mgs of KLONOPIN a day, which somewhat helps but not a whole lot.

I have been reading this blog, and began using about a month ago the recommendations many say here to use:

1) CoQ-10 200 mgs a day
2) Acetyl L-Carnitine, 1000 mgs a day
3) Vitamin E, 800 I U a day
4) Magnesium, 250 mgs a day
5) Purified fish oil, 4000 mgs 3 x a day
6) One of the NERVE SUPPORT FORMULA (the high Vitamin B1 and B12 dosages) every other day.
7) Zinc, 30 mgs a day
8) Two multiple vitamins a day

WELL, I AM BURNING WORSE THAN EVER !!!! My legs and feet are on fire so bad right now that I don't know what to DO !

I have TRIED EVERYTHIING, and nothing helps !!!

What do you all recommend, please, I BEG YOU FOR YOUR HELP !!!

I have seen FOUR neurologists, TWO Pain Management experts, orthopaedic surgeons, neurosurgeons, endocrinologists....NO ONE IS HELPING ME !

And the natural supplements are not either, I continue to grow worse !

Someone told me that sometimes with natural remedies like these supplements, the pain becomes worse at first but then becomes slowly better.

My feet are not as NUMB as they were, not as much pain...but so BURN !!
And my legs, too...and my feet are STONE COLD, especially my toes !

I am in such pain with this burning pain that the only remedy is to KNOCK myself out with the KLONOPIN for a while.

Am I taking too much of the vitamin supplements? I have a friend who says to STOP it all, even the vitamin supplements, as I have "toxified" my nervous system worse than the DEPO-MEDROL strong STEROID SHOT DID...and may have permanently damaged my nervous system !

I DO NOT KNOW WHERE TO GO FOR HELP...I have spent TENS OF THOUSANDS of $$$$ on medical tests, MDs, Rx and now vitamings....am losing my job,may have to apply for Social Security Disability because the burning pain in my feet and legs and even in my face around my lips is so bad I can no longer bare it .... other than "CHECK OUT"...I do not know what else to do for relief !

PLEASE, PLEASE, I beg you good people...any advice, please !!! PLEASE !!!

Thank you !!

Hurtin' Nerves
Chicago northern burbs
USA

I think you may have developed RSD... this is a nerve condition that results from trauma. There is a board here for it:

http://neurotalk.psychcentral.com/forum21.html

It is a condition where the sympathetic nerves get stimulated and don't shut off. It is not responsive to supplements the way PN is.

Certainly by now, you should see some positive results with your supplement list. If you are not, then I'd stop taking them.

I would get tested however to see if you are B12 deficient, have a reading below 500. Also people with chronic pain can have very low levels of Vit D. When this is fixed some pain may resolve. So get tested for both of these.

RSD may spread and become full body symptom-wise.

You may also have an autoimmune problem, and this can be tested for with blood tests.

The posters on this board are not really experienced with spinal injections and damage as a result. You might ask these questions on the Spinal forum here:
http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

Thanks for the hope, I need it.

Quote:

Originally Posted by LizaJane (Post 260117)

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.

Thanks for your contribution. Could you be a little more specific about the supplements you are or were taking and the dosages. My Dr.'s just want to give me heavy drugs to deal with my neuropathy. Any suggestions would be so helpful. I sure hope you still check your messages here once in a while.Thanks,
Faithful

Several people here have found that as their nerves were healing the pain actually became worse for a while. The pain also may feel the same as when the pain when the nerves were first being damaged...in your case burning. The fact that your feet are less numb and the other pain has diminshed the burning may actually be a good sign. Only time will tell if you continue to take the supplements.

Any improvement would be WONDERFUL !

I have been suffering with this dam neuropathy for 5 years now , and it is getting worse. Nice to read some stories of hope. The pain and burning has now moved into my hands and scrotum as well even with tight glucose control. It is becoming all consuming. My Dr's say this is nothing left to try, and that basically there is no hope. This is my first attempt to reach out and talk with others who suffer as I do. Not sure what else to say. Hope this post finds you all well and maybe haveing a tolerable day.