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Old 05-07-2012, 03:14 PM #11
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About the sudden onset.... I think some PN is like "the death of a 1000 cuts"... there is some flexibility and tolerance to insult built into nerves, and when a critical overload occurs (which may be several things together) then, you get major symptoms.
Maybe that critical overload was the PT. Who knows. It seems like with this conditon there are way more questions and uncertainty than answers.

Thanks, again.
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Old 05-07-2012, 03:32 PM #12
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I ask about the chemo, because there is a specific supplement shown to help with chemo damage...

acetyl-l-carnitine.

It remains an option for other toxic damages, for mitochondrial restoration.

Here are some links for that:
http://neurotalk.psychcentral.com/post653568-5.html
and:
http://neurotalk.psychcentral.com/sh...t=mitochondria

Mitochondria are the energy powerhouses in cells. When damaged the cell cannot function well, and when many are damaged, then symptoms occur.

HIV drugs were the first to show this toxicity and that community has used acetyl carnitine for a long time to help combat that neuropathy. But it is also used in chemo induced neuropathies. So it may help you too, since other drugs like antibiotics damage mitochondria. The mitochondria in our cells are descendents of bacteria, that were incorporated into mammals to help them metabolize food. When damaged, by drugs, they start to malfunction and the cells, if nerve cells start to malfunction as well. Much research now is looking at mito damage as a cause of chronic illness in humans.

The CoQ-10 helps mito functions too, but if you don't see any improvements with the two things you just ordered, consider adding acetyl carntitine to the mix.
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Old 05-07-2012, 04:12 PM #13
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The CoQ-10 helps mito functions too, but if you don't see any improvements with the two things you just ordered, consider adding acetyl carntitine to the mix.
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I bought them both today as well as Neuragen PN cream.

It doesn't say to take the r-lipoic acid on an empty stomach, but I will.

I will add the CoQ tonight and am off the femara.

But my experience with medical conditions is that solutions are rarely simple or treatment effective. Do this and it will be gone (or improved).

The only time that happened with me was with carpal tunnel surgery (both hands 6 weeks apart) - 15 minutes later - gone! How often does that happen with medical problems?

I will certainly consider adding this to my regimen - can you get it at GNC?

Thanks, again.
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Old 05-07-2012, 04:23 PM #14
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Lightbulb

All you can do now, at this point, is aid healing...if it is possible.

Sometimes it is possible, other times not (dorsal root ganglia damage).

GNC tends to be quite expensive. But you can get it anywhere you want. I get mine from Puritan's Pride. But I don't use it every day, and only when I get burning which is less often.

Acetyl carnitine also helps with exercise tolerance and may reduce lactic acid build up in muscle with use (lactic acid comes from glucose as a fuel). The body builders use huge doses of it for this purpose.

But for older people it can help take a load off the glucose being burned in the mitochondria. Carnitine helps with using fatty acids instead. So if you get muscle burning with your symptoms the carnitine can help. The price of acetyl carnitine is coming down, but at GNC most things are way overpriced IMO.

I'd start at 250mg to 500mg a day, and increase up to 2 grams if needed. I find 250mg a day enough for me most days and I am just a bit older than you. When I was working out alot I used 1 gram a day. I change doses depending on my exertion levels.

This is mostly for people with suspected damage to the mitochondria. It is rather benign, so is not harmful in any way.
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Old 05-07-2012, 04:30 PM #15
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I'd start at 250mg to 500mg a day, and increase up to 2 grams if needed. I find 250mg a day enough for me most days and I am just a bit older than you. When I was working out alot I used 1 gram a day. I change doses depending on my exertion levels.

This is mostly for people with suspected damage to the mitochondria. It is rather benign, so is not harmful in any way.
[/QUOTE]

I exercise everyday - treadmill or low impact aerobics. I have given up going to the gym for the weight machines due to the issues I have with neck and shoulder pain (rotator cuff tendonitis) - plus I don't need muscle soreness on top of everything else I am dealing with.
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Old 05-07-2012, 04:39 PM #16
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All you can do now, at this point, is aid healing...if it is possible.
I don't even have a diagnosis - not that I think it really matters at this point. The medical community has that catch all phrase - ideopathic - when they don't know the cause which makes it easier for them to tell you there is no effective treatment.

Think about it. How many medical conditions does the medical community solve - I mean - take this or do this and it will be better? I mean some surgeries fall along those lines - bypass, weight loss, organ transplants. But those are singular conditions for the most part.

Think of the big medical problems - diabetes, alzheimers, parkinson's, lupus, MS, arthritis, advanced cancer - they really can't offer much of anything. They can't even cure toenail fungus. Then there are annoying but not life threatening conditions like tinnitus, PN, eye floaters - things like that for which we are told "just learn to live with it".

If I sound jaded, I am. I have had my share of medical conditions. The way I see it, it's someone else's turn now. I don't need another one.
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Old 05-07-2012, 06:07 PM #17
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If I sound jaded, I am. I have had my share of medical conditions. The way I see it, it's someone else's turn now. I don't need another one.

I don't have anything life threatening or scary like breast cancer, I do have a slowly crippling neuropathy, which is definitively untreatable and painful.
I also have spent a lot of time with my son, who has a congenital hip dyplasia, at a world class children's hospital. My son is able to not only walk, but run, because of what doctors, in particular one spectacular pediatric orthopedic surgeon, can do. We are surrounded there each time we go by children with far more serious issues than his, and his was not simple. He was born without a hip socket, but it is as nothing compared to what many children suffer. What the doctors are able to do for these children is amazing, but some of them will still die, and many of them will never be able to live independently.
The question is not always "why me?" but "why not me?"
Just learn to live with it is really not always a bad answer. I think there is a lot of wisdom in that advice, even if the doctors themselves don't understand the power of it.
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Old 05-07-2012, 07:05 PM #18
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he question is not always "why me?" but "why not me?"
I guess I can answer that. Because I've had my share of medical problems and heartbreak. My husband developed terminal cancer at the same time I had breast cancer. He died 6 years ago at the age of 56. The summer of 2003 is when I had my herniated disc putting me in bed for 6 weeks unable to walk or sit. He was a teacher and was fortunately able to care for me but his whole summer, when he would have preferred to rest and play golf, he took care of me. Having been diagnosed several years earlier with Barrett's esophagus he went for yearly endoscopies. He had his that summer in early August. It came back as cancer. So, after taking care of me all summer, he gets cancer and has surgery in late August. I was barely walking at that point. We thought we had all dodged the bullet. He goes back to work in November. The following June the cancer has metastasized and is terminal. He died a year later, after it went everywhere, including his brain. He never lived to see our daughter graduate from college, walk her down the aisle or see our two grandchildren born (one from each child). I will never enjoy what would have been our retirement years traveling and enjoying the fruits of our years of labors. Living alone, especially with pain and no one to help, is a struggle. So, yeah, I get to say, why me?

I have other medical conditions that I will not get into, but yeah, I do get to say "why me". It's someone else's turn who hasn't had to face what I have, someone who would be better able to handle it.

And none of this is to say -"my life is worse than yours" type of rant. That is not my point. We all have our burdens. I am sorry for yours.

I am sorry that you have had pain and have a child with a physical deformatity but am happy that his surgery has been successful. Surgery seems to be one of the areas that has promise for things indicated for it. Having a child with a medical problem is a huge worry for parents. I am glad he is doing well.

But "learning to live with it" to me is a cop-out. I could hang out a shingle and treat people with various meds and tell them to learn to live with it. If that's the best they can do why is health care so expensive?
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Old 05-07-2012, 07:24 PM #19
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But "learning to live with it" to me is a cop-out. I could hang out a shingle and treat people with various meds and tell them to learn to live with it. If that's the best they can do why is health care so expensive?
That is a question way beyond me!
I do not feel badly about any of my problems. But, as I said, they aren't as serious as yours. I am inquisitive about mine, where I will end up and when, and grateful that my son, adopted from Guatemala as a "healthy" infant, isn't a cripple limited to begging on the streets there. My eldest son has inherited my condition, and at 27 he has definite muscle loss. I have a fatalistic attitude for the most part and expect, or try to expect, little from life. I try in this way to protect myself from further hurt. It doen't always work. I doubt that it would work in the face of the relentless losses you have faced, but I hope that you are able to achieve some sort of equilibrium. PN is a condition in which doctors are often of little use.
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Old 05-07-2012, 07:26 PM #20
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All you can do now, at this point, is aid healing...if it is possible.

Sometimes it is possible, other times not (dorsal root ganglia damage).

GNC tends to be quite expensive. But you can get it anywhere you want. I get mine from Puritan's Pride. But I don't use it every day, and only when I get burning which is less often.

Acetyl carnitine also helps with exercise tolerance and may reduce lactic acid build up in muscle with use (lactic acid comes from glucose as a fuel). The body builders use huge doses of it for this purpose.

But for older people it can help take a load off the glucose being burned in the mitochondria. Carnitine helps with using fatty acids instead. So if you get muscle burning with your symptoms the carnitine can help. The price of acetyl carnitine is coming down, but at GNC most things are way overpriced IMO.

I'd start at 250mg to 500mg a day, and increase up to 2 grams if needed. I find 250mg a day enough for me most days and I am just a bit older than you. When I was working out alot I used 1 gram a day. I change doses depending on my exertion levels.

This is mostly for people with suspected damage to the mitochondria. It is rather benign, so is not harmful in any way.
You seem to know a lot about medications that hurt and help.

Have you ever heard of astaxanthin? Dr. Mercola, D.O. has promoted it 3 times on Dr. Oz's show. Supposedly it is 550 times stronger than vitamin E, 800 times stronger than CoQ10 and 6000 stronger than vitamin C. It is a powerful antioxidant and he recommends it be taken at 12 mg per day for 4-6 weeks and then reduced to 4 mg daily. Next to vitamin D, he says everyone should take this, particularly baby boomers. His website is mercola.com.
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