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Old 09-16-2012, 07:06 AM #251
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Default A few things--

Given you said you had a bad infection ("terrible flu", though antibiotics won't help with true influenza, which is viral), the possibility of a post-infectious molecular mimicry autoimmune attack on the nerves should be considered. Certainly, Guillain Barre is suspected to arise from this mechanism, as are certain other acute-onset neuropathies:

http://neuromuscular.wustl.edu/time/...htm#neuropathy


The above page comes from the Washington University at St. Louis Neuromuscular web site, which is an excellent database of neurological conditions.


And, just in my experience, most neurologists who do not specialize in neuropathy might have little idea how to test for such conditions. Going to Mayo is a suggestion, but in my opinion, Johns Hopkins in Baltimore, Cornell-Weill/Columbia in New York, or The Jack Miller Center in Chicago might be better bets, if travel and money is not a concern. All of these centers are major research facilities for neuropathies, have done much of the work in identifying their complexities, and may be better at getting to a diagnosis.
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Old 09-16-2012, 07:13 AM #252
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Question

Welcome to NeuroTalk, Toddy.

What antibiotics did you take? Did you get stomach flu too?
Mexico and diarrhea are common links.

Some antibiotics cause PN in some people.
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Old 09-26-2012, 03:22 PM #253
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Default Anti Mag

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Originally Posted by LizaJane View Post
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 first diagnosed with CIDP and was getting IVIGG for treatment. Then my doctor changed the Diagnosis to Anti Mag with my insurance will not pay for IVIGG treatments. The treatments were helping but now I am not getting any kind of treatment. I do take a vitamin 12B shot once a week. Is that anything I can do to help at this point?
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Old 09-26-2012, 03:31 PM #254
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I was first diagnosed with CIDP and was getting IVIGG for treatment. Then my doctor changed the Diagnosis to Anti Mag with my insurance will not pay for IVIGG treatments. The treatments were helping but now I am not getting any kind of treatment. I do take a vitamin 12B shot once a week. Is that anything I can do to help at this point?
I would talk to your doctor, explain how the IVIG was helping and get him to resubmit with a dual diagnosis, or go back to the other.
Without the proper diagnosis code, you are stuck.
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Old 10-02-2012, 06:12 AM #255
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Quote:
Originally Posted by LizaJane View Post
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.
LIZAJANE Where are these stickies you speak of? Really interested in your self Tx. I was Dx in 2010 with skin biopsy, with small fiber Neuropathy, but the Neurologist reallyt didn't talk about it "I just had it" She failed to explain. The symptoms started on my thighs (which is unusual), and is now raising havic to my calves/feet. I just went to my VA doc, another knowledgable, arrogant, piece of work . Asking questions about my symptoms, and possiblity of having MS (symptoms are simuilar); "NO - YOU HAVE PERIPHERAL NEURITIS - YOU DO NOT HAVE MS!" Ok Doc, you made your point - So what else do I need to know, or expect, or manage it? [Nothing replied- just disturbed over the fact that I was concerned over having MS. I'm always reading material on specific Dx's, and unfortunatley, I see too many similarities with what I'm experiencing - I see no problem asking a doc about possibilities. She didn't have to have a cow. I felt I was waisting her time with my concerns. So much for the VA. Some Docs just don't have bedside manners. By the way, did you experience fasiciulations at all - mine are in my calves - feels like worms moving around - looks like it too , the muscles just quiver relentlessly. Anyhow, I would like to know more about your self healing - stickies. How do I get to them? JW
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Old 10-02-2012, 09:22 AM #256
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The stickies are on the main index....there are 3 of them now.
This thread is one of the three.

LizaJane may have her own mixture of supplements that worked for HER on this thread somewhere in the beginning. You'll have to read it to find them. Everyone is different... some things work for some people and not others. A lot depends on your trigger and cause. That is why we ask so many questions, about your lifestyle, when you started with PN symptoms.

Hereditary issues are always possible too. CMT (Charcot Marie Tooth) is the collective name for those. If you have THAT there are no supplements really shown to improve that type, as yet.
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Old 10-02-2012, 06:31 PM #257
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^^I've started taking half my daily dose of magnesium, potassium and benfotiamine at night. I know, I should have done this long ago. We'll see if it helps my foot and leg cramps. I am also taking the smallest possible dose (of everything), and cutting back whenever I can. I'll play (up or down) with that, too.
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Old 10-25-2012, 08:01 PM #258
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My PN pain was absolute hell just over 3 months ago with severe stabbing pains in my toes and fingers and burning and insane cramping that made me want to seriously kill myself. It was also the cause of a few full nervous breakdowns. This is spurred on by my Internet research from so many places that claim PN is permanent, when clearly this is NOT true, since there are success stories.

But now after nearly 4 months after being floxed by Cipro, I still have some of those pains but far less intense and in flare-ups, rather than all the time. And as I said before, there are days when I feel "ALMOST NORMAL" meaning the pains are very light at times. So slowly, but most certainly it appears to be fading away.

I'm not a success story as I'm still struggling with the pain on a daily basis, but there is absolutely no doubt that I have indeed gotten much better. Thank God.

I just hope I do return to normal, or leastwise a level where I barely notice my PN -as I have heard of from others.
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Old 10-25-2012, 09:34 PM #259
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Nervous, just see if the Benfotiamine works for you taking it at night. I take it in the morning. It can energize me if I take too much, so I just wanted to tell you. Just in case you have trouble sleeping.
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Old 10-26-2012, 03:51 AM #260
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Quote:
Originally Posted by Jesse M View Post
My PN pain was absolute hell just over 3 months ago with severe stabbing pains in my toes and fingers and burning and insane cramping that made me want to seriously kill myself. It was also the cause of a few full nervous breakdowns. This is spurred on by my Internet research from so many places that claim PN is permanent, when clearly this is NOT true, since there are success stories.

But now after nearly 4 months after being floxed by Cipro, I still have some of those pains but far less intense and in flare-ups, rather than all the time. And as I said before, there are days when I feel "ALMOST NORMAL" meaning the pains are very light at times. So slowly, but most certainly it appears to be fading away.

I'm not a success story as I'm still struggling with the pain on a daily basis, but there is absolutely no doubt that I have indeed gotten much better. Thank God.

I just hope I do return to normal, or leastwise a level where I barely notice my PN -as I have heard of from others.
I'm so glad that you're feeling better but I'm not understanding what you mean by being "floxed" by Cipro. Were you taking it to help your PIN or did you stop taking it? If you would be so kind to explain.
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