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Old 12-11-2008, 10:38 AM #1
sailprice sailprice is offline
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Default Newly diagnosed

I was just diagnosed with small fibre axonal peripheral neuropathy. Looking for information and suggestions. Doctor says the nerves are dying from the bottom up. (Very scary).

Doctor (neurologist) tested for a cause with negative results and is suggesting my statin and blood pressure medication which have PN as a side effect as the cause.

My toes are somewhat numb and feet tingly. All the neuro tests, reflexes, cold, vibration, EMG and another test that I can't remember the name of, were positive for PM in my feet and carpal tunnel not PN in my hands.

Fortunately I only have minor pain. I have read many of the postings and suggestions for B12, B6 and Folate.

I have questions about how much activity, protection from cold, etc. I should do. Is there a way to regenerate nerves? Is my PN mild or serious?

Any thoughts would be appreciated.
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Old 12-11-2008, 12:57 PM #2
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Lightbulb statins cause

damage to the mitochondria--the energy producing parts of the cells.

Agents to help with mitochrondria functioning are:

1) acetyl carnitine -- 1-2 grams a day
2) CoQ-10 --especially for statin users, 100mg or as much as you can afford. Buy a good softgel with Q-sorb or other enhancing formula
3) Biotin - this helps mito also
4) r-lipoic acid 100mg a day (this is improved alpha lipoic acid)

What blood pressure medication do you take? I am unaware of PN from blood pressure meds. Some do deplete nutrients, but damage to nerves? I'd like to know what you use.

Take the B12, B6, folate and fish oil in addition to the above named ones.
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Old 12-11-2008, 01:29 PM #3
dahlek dahlek is offline
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Default Sailprice? It takes lots of COURAGE

To begin to post.... It sounds like 'things' are just starting tho. Is there any additional background you can offer tho? I know it's hard to plain old 'put it out THERE' but at the same time, one or more of us has had not YOUR experience, but one that might be similar.
And yes the nerves dying from the 'ends up' is what can and does happen, but there are lots of treatments, interventions, supplements, and other things that can help...IF we know what all mite have started your issues.
For myself? I 'got' the nunbnessess a few months after I'd had a long bout of pneumonia...things went downhill from there to an auto-immune neuropathy. Sooo, in my humble, non-medical, fully professional patient opinion!? Find and get all of your tests results from about 6 months before all this stuff started from any and all doctors and labs etc... and then work your way forward. Getting and keeping these records is essential as in another year...well, so much is going to have 'happpened' that you won't remember who you saw in April! Get my drift? RECORDS help new docs you see determine what they need to test/do etc and get to what mite be the roots of your problem.
Mrs D is a super resource in starting to deal with lots of what you mite have. But, you are going to have to learn lots to get a handle on what your own issues mite be. It IS work! Often a lot of work.
But, the more you know, the more open you can be to new options and treatments, as well, as to how to deal with it all.
Even just 'tingly' toes are NOT pleasant! I for one wish truly that we didn't have to deal with them at all. Read learn and keep at it! Don't let, EVER, a doc say 'that's all we can do. Be sure they test you thoroughly and THEN if nothing more can be done? There are meds.... Sigh. Hugs and hope! - j
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Old 12-11-2008, 01:51 PM #4
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Default

Thanks for answering.

I'm off to my doctor for a follow up today. Glad to have some good questions for him.

I take Toprol XL 25mg and Crestor 5mg each day. Have been on both for over 5 years. Doctor says my PN has been in the works for 10 years, sort of sounds like the statin is the culprit.

He did a very comprehensive blood work up with Qwest Diagnostics and I'm getting the results today, but looks like everything is normal.

I also have numb spots on my knees, long standing, and wonder if there is a radiculopathy also. Another question for doctor. Will start keeping good records.

Thanks.
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Old 12-11-2008, 03:32 PM #5
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Post beta blockers...

beta blockers are no longer used as first line interventions for blood pressure. Your dose is small.
I cannot find neuropathy links for metoprolol, but there are other long term things that are linked to its use, including increasing lipids..for which you are taking Crestor.
So consider discussing with your doctor another method of lowering blood pressure.
It is counter productive to take a drug that raises cholestrol!

Cold extremities often occur with beta blockers, and this reduces oxygen and nutrients to the hands and feet, and over time can affect nerves. The drug itself is less likely a culprit, but it may be acting on your normal circulation in a negative way.

Statins on the other hand poison the mitochondrial system.
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Old 12-13-2008, 01:08 PM #6
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Default

Thanks for all the good information.

I posed vitamin/supplements information to my doctor who apparently does not believe in their value. He said I would be peeing my money away since all I need are available in my diet.

He also said that there is no treatment for my neuropathy since we don't know the cause. And said the progression would be slow since it has taken 10 years to get to this point which he determined in the testing process.

I do plan to try the vitamin/supplement suggestions. My B12 level is 627.

Thanks again.
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Old 12-13-2008, 01:57 PM #7
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Lightbulb another doctor's opinion...

I suggest you go to Dr. Jay Cohen MD's website:

http://www.medicationsense.com/

I have this book, and can attest to his expertise on this subject.

Your doctor is mistaken, and you need either a new one,
or to research this yourself. Dr. Cohen supplies MEDICAL support research papers for his opinions.

The book is only about $10 on Amazon.

Many of us here on PN have improved with careful choice of specific nutrients, to help stop progression and to promote healing. For example, statins poison your mitochondria...like other drugs including those used by HIV patients. They have found over a DECADE ago, that acetyl carnitine helps reverse this damage and protect. The same goes for chemo patients.
You can do this too.

Only doctors who are uninformed and stuck in the past, believe that expensive urine comment.
In reality genetic research is showing that people vary considerably in how their bodies biochemically operate. Some need support of B1, others more B12, others more Vit C, there is a proven dependency that people are born with for B6, a genetic error in about 50% of alcoholics that results in low B6 and zinc called pyroluria. I could go on and on.... but you see, we are NOT all the same biochemically.

I am beginning a new thread on Vitamin forum on alternative cholesterol maintenance.
Soon I will have the supplements there. Right now I am just posting links that people need to
read to understand the "problem". For example, Crestor has been lowering YOUR CoQ-10 which is a serious thing.

Here is just one of the papers showing acetyl carnitine protective of cell death in neuropathies:
http://www.annieappleseedproject.org/aconappane.html
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 12-13-2008 at 02:27 PM.
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Old 12-13-2008, 04:40 PM #8
dahlek dahlek is offline
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Default I have to agree w/Mrd D!

That many, often most, docs don't have a CLUE about supplements? Some may willy-nilly suggest you take 'this' or 'that' but not really with a grasp of all that neuropathies and all that mite cause them and all the problems they could cause entail.
Think of it this way? Well, lots of supplements you will be simply having go thru you? But, if you've asorbtion issues or the like there is no real way to tell, [besides blood tests] that you are getting enough of what you need.
B-1, B-12 and C excesses go thru you. Others can hang around, such as B-6.
There is a LOT to learn in this quarter and it can be confusing? But Mrs D and others will surely help you thru the maze. And, maze it is!
Here is the Vitamins..etc part of NT that can help you....click on the blue.
http://neurotalk.psychcentral.com/forum49.html
Hope this too helps, keep at the good stuffs? - j
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Old 12-16-2008, 05:01 PM #9
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Default lapoic acid

Quote:
Originally Posted by sailprice View Post
Thanks for all the good information.

I posed vitamin/supplements information to my doctor who apparently does not believe in their value. He said I would be peeing my money away since all I need are available in my diet.

He also said that there is no treatment for my neuropathy since we don't know the cause. And said the progression would be slow since it has taken 10 years to get to this point which he determined in the testing process.

I do plan to try the vitamin/supplement suggestions. My B12 level is 627.

Thanks again.
when I asked my neuro about the supplements I was taking ,He said to stay with ala ,but had no comment on the others. I have since switched to r-lapoic acid which is better than ala.
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