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#11 | ||
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Quote:
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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"Thanks for this!" says: | DejaVu (08-23-2015) |
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#12 | ||
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Magnate
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--would not involve re-myelination to any great extent; the small fibers are only thinly meylinated, or in many cases unmyelinated, so repair-regeneration there is primarily axonal in nature--the re-growth and reconnected of the nerve tracts themselves.
Of course, even with larger fiber neuropathy that involves larger, more heavily myelinated nerves, axonal regeneration can occur under the right conditions. Repair of myelin sheathing can occur considerably faster (weeks/months) than repair of axonal fibers can, though (months/years). If axons are destroyed beyond repair, though, they won't produce myelin, either. From the standpoint of recovery, the "best" scenario is to have a neuropathy that only attacks myelin but leaves the axons intact. But a lot of demyelinated neuropathies are hard to arrest, and a lot of them lead to "secondary axon degeneration" when the axons are left uncovered and unprotected by their myelin casings for long periods. |
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"Thanks for this!" says: | bluesfan (08-21-2015), DejaVu (08-23-2015), KnowNothingJon (08-21-2015), Marie33 (08-24-2015), pinkynose (08-21-2015), v5118lKftfk (08-21-2015) |
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#13 | |||
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Wisest Elder Ever
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This is another definition of the 4 basic types of sensory (afferent) fibers:
http://faculty.washington.edu/chudler/cv.html I like this link because it shows how much myelin is present on each type of fiber. The whole website is very interesting and easy to understand too. So look around there when you have time. You will learn alot. ![]()
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** 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.
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"Thanks for this!" says: | DejaVu (08-23-2015), v5118lKftfk (08-21-2015) |
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#14 | |||
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Wisest Elder Ever
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Glenn's explanation is very important to understand.
Statins block the growth factors that result in remyelination, of axons. This is only one terrible thing of many that they do to people.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** 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.
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"Thanks for this!" says: | DejaVu (08-23-2015) |
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#15 | ||
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Member
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This is such an excellent question.
I'm trying to figure out "how to be honest with myself" on the exact same question. My chemo neuropathy started exactly two years ago. For the last 1.5 years it's been fairly level, only slightly improving at the point where I can't stand or walk for long periods and I curtail many of the things I used to do, along with zaps, foot cramps, slight numbness, occasional tingle flareups. Due to other challenges, I am only now starting to really research and implement my neuropathy program which is a whole suite of stuff. This is a lot, a lot of work and involves taking greater therapeutic doses of stuff that I wouldn't normally take long term. I ask myself, am I being foolhardy? Is it too late now? Can Chemo PN really improve after 2 years? Is there still some realistic improvement I can shoot for? Natalie |
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"Thanks for this!" says: | DejaVu (08-23-2015) |
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#16 | ||
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Member
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Quote:
So, how can we tell from the skin biopsy where the damage is? For example, my Sweat Gland test said i was normal, my Epidermal Nerve Fiber test said i showed "Rt Calf, Epidermal Nerve Fiber Density: Skin with significantly reduced Sweat Gland Nerve Fiber Density, consistent with small fiber neuropathy.". So, my neuro tells me, "Yep, its SFN, but it's early and mild". Seems like a general diagnosis and he offers not much else.
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Diagnosis: Idiopathic Small Fiber Neuropathy (Statin Induced) • R-Lipoic Acid: 100mg - 300mg Daily • Acetyl-L Carnitine: 1500mg Daily • Vitamin B12: 1000 mcg Daily • Magnesium 500mg Daily • Grape Seed Extract 200mg Daily • Benfotiamine 300mg daily |
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#17 | |||
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Wisest Elder Ever
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I know personally that regeneration does happen.
When I was 12 I had a tumor removed from the left instep of my foot. This was a delicate surgery, very painful, and difficult to recover from. This hemangioma was large and deep into my foot with roots going in between my tendons. When I finally recovered, 4 of the stitches (I have over 50 stitches and a big S scar over my whole instep), became infected, because they put the wrong kind of dressing on it. So the top of my foot and part of my toes were numb for many years after as nerves were severed. But they did grow back eventually... it took years. What I have now is a slight loss of feeling on that foot, a bit more PN than my right foot, and some lingering swelling because lymph channels were damaged. But the feeling did come back. Now that I am old, the lymph is not circulating back as it should so I get some swelling. But the Magnesium lotion takes that down for me nicely. So I do know that the peripheral nerves can regenerate. But don't expect them to do so at 100% and take you back to what you were before the damage happened.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** 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.
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"Thanks for this!" says: | bluesfan (08-21-2015), DejaVu (08-23-2015), northerngal (08-21-2015), Patrick Winter (08-21-2015), stillHoping (08-22-2015), v5118lKftfk (08-21-2015) |
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#18 | ||
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Big Thanks Mrs. D. Your post is very helpful. (as always)
Since you are so involved with Neurotalk, have you seen any patterns? Of course, selfishly, I am curious about what patterns you see with chemo neuropathy regeneration. .... but for other readers / types have you seen patterns as well ? Perhaps others are also caught in my dilemma .... At some point, it will be "healthier" for me to switch mentality from spending lots of time in researching / implementing therapeutic doses of things I wouldn't normally take long term to support regeneration, to instead accepting I am most likely near the best I will ever be, learning how to live with this level, and trying to refocus my energies to living fully with where I am. (Right now researching, trying, testing, visiting doctors is lots of time, work, resources). Of course, I will always be hopeful and open to regeneration, but I want to be honest with myself as well. With Chemo neuropathy, I have often heard one only have a limited amount of time (but haven't heard any guidelines to how long this is). I find this very stressful. I feel like I am in a game show, racing a time clock and have to figure out things before the buzzer goes off with little information. If I don't get the answers right in a limited time, then my penalty is that I am stuck with lifelong debilitation. .... hope this isn't hijacking this thread .... I suspect this line of thinking is probably typical, very relevant to the thread topic and may help others as well. Any thoughts ?? |
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"Thanks for this!" says: | DejaVu (08-23-2015) |
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#19 | ||
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Member
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I take 600 mg of ALA twice a day- I know, I know RLA, I will change when I run out. While it is not overly expensive I have enough to finish out my cache before switching over. I have been taking it for over a year.
I will not stop taking it any time soon despite the fact my pn marches on. It could be lowering impact of symptoms or progression. I am unwilling to remove it to track if I feel worse at this point, as I have not found it to be hard on me, save some low grade garbage that tore my stomach up. Be mindful of the quality you purchase. Do not, say purchase from retail giants. At some point I may assess it at that level, but for now it stays as I monkey with other parts of my diet and regimen. I may actually add fish and a dab of dairy and try gluten free. I don't think gluten is an issue for me, but I am day 11 of being plugged into a battery 24/7. It is constant and at times, overbearing. I hope whatever path you take offers some relief, Natalie. Jon
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I urge you to please notice when you are happy, and exclaim or murmur or think at some point, "If this isn't nice, I don't know what is." - Kurt Vonnegut "It's an art to live with pain, mix the light into grey"- Eddie Vedder Just because I cannot see it, doesn't mean I can't believe it! - Jack Skellington |
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#20 | |||
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Wisest Elder Ever
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Regarding chemo damage:
I think this is similar to drug damage (like statins and some others). The chemo patients don't seem to stay on the forums for long, so I don't see often much progress with them. The statin damage posters don't seem to improve much either. The neuron has dendrites-- 1) the fine collecting sensing fibers, 2)the cell body where the nucleus lives and the mitochondria, and 3)the axon where signals are sent out. As Glenn has explained, if the cell body dies... there is no energy producing capability (mitochondria) so then nothing gets sensed or sent up the to brain. Chemo kills cancer cells and normal cells. So I don't want to be a downer, but if enough cells die, then you are out of luck. If they are only damaged, they may repair themselves, and that takes time (and patience). This all may change with stem cell research and therapy. But I do think it is difficult to predict what will happen with each person, since everyone is so different.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** 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.
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"Thanks for this!" says: | DejaVu (08-23-2015), v5118lKftfk (08-21-2015) |
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