Regeneration - when is it too late
 

Hi all,

On average, when is it too late for small fibre nerves to regenerate? I understand there is a timeframe within which they can regenerate and if passed may never recover. Is this rigt and do you know how long?

I have heard both sides of the argument myself. Those saying that the nerves can heal and those that say they can't. I do know this, there are clinical studies that have shown regrowth of mylein sheath with supplementation. There are also confirmed cases of people who have recovered from SFN. So, i get a little perplexed when i hear that SFN is not curable and that damaged nerves are permanent and that it is a case of pain management once it occurs.

Here are some studies that give me hope:

B-12 to repair nerves?
http://www.ncbi.nlm.nih.gov/pubmed/8021696

(yeah, I know its rats, but if people can panic when rats get cancer from aspartame, why can't we gain hope when they show they can heal as well).

Alpha Lipoic Acid:

http://www.ncbi.nlm.nih.gov/pubmed/10595592

http://www.ncbi.nlm.nih.gov/pubmed/9285502

Look at the Supporting Research on the lower part of this page

https://umm.edu/health/medical/altme...phalipoic-acid

I refuse to believe that the body does not want to heal itself when damaged.

Thankyou for such a detailed response. I shall read!

I just try to keep hope is all. There is a lot of negative stuff that will make you feel hopeless.

There are better studies out there as well i just can't find them. I know the Alpha Lipoic Studies were the ones that showed the most promise.

Hi Patrick and Joanna,

I just came across an article from the Linus Pauling Institute about the use of Alpha Lipoic Acid to treat PN from diabetes. Here's the link if you're interested. (I also posted it in another thread)

http://lpi.oregonstate.edu/mic/dieta...ease-treatment

I feel like there will be meds coming out soon that will help nerve regeneration

Nerves can regrow dendrites, or extensions of the nerves, but not regenerate the nerve itself. humans do not have this capability. It is more common in non-mammals, usually the ones that can regenerate whole body parts.
Nerves can make new extensions to compensate for damage, but not if theres too much loss of myelin or damage, then its less likely recover from any amount.

To elaborate--
 

--when the nerve cell body, with the nucleus, dies, than the nerve cell is gone, and since nerve cells do not under normal circumstances reproduce, anything that kills off nerve cells will be detrimental.

Nerve cells DO grow new axonal connections and links to other nerve cells, though--that is how we consolidate memories and learning, and develop motor skills that do not require our conscious attention. The fibers, under the right conditions, absolutely re-enervate body parts.

Exhibit A in this are my comparative skin biopsy results over time--I have slowly, over the years, recovered some of the intraepidermal small-fiber nerve density that I lost during my acute neuropathic attack in 2003. Don't know if I'll get back to whatever my original density numbers were--and of course almost no one knows those original numbers, as skin biopsy is not done on asymptomatic people except very rarely for research purposes--but I've gone from 3rd percentile to 5th percentile in some sports to 16th to 20th percentile in those spots over several years, absolutely indicating some re-enervation, with a corresponding reduction in symptoms.

Of course, I am unusual--my neuropathy, primarily small-fiber and involving a highly acute (hours/days) full body presentation, is not the most common scenario. Acute neuropathies often result in at least partial recovery if the neuropathic process can be arrested, though recovery is often incomplete and patchy.

I always though the heart of SFN specifically was that the Mylein sheath was basically gone or deteriorated. That causing the common symptoms of burning, biting, buzzing, etc. My neurologist said that is a big part of it and there is a debate on whether it can be regrown or not. The nerves themselves are usually intact depending on how far it has progressed, no?

In my case I have Normal Epidermal nerve Fiber Density but I have skin with significantly reduced Sweat Gland Nerve Fiber Density (consistent with SFN). The Result was 30.4 which is below the required 36.5.

My neurologist said years ago they would have said there was nothing wrong with me but we have this new test that can show more. He said they basically said it would've just been considered paresthesia or possible Fibromyalgia. he tells me I have a very mild case of SFN! I tell him you just be kidding, what does a serious case feel like!!!

Regeneration - when is it too late
 

http://img.medscape.com/fullsize/mig...65795.fig1.gif



Hopefully this picture makes sense. It's the best one that I could find that demonstrates all the classifications and properties of nerve types.

That helps a lot thanks

Small fiber neuropathy--
 

--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.

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.;)

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.

Realistic hope ???
 

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

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.

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.

Big Thanks Mrs. D / dealing with time pressure
 

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 ??

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

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.

Sorry to ask a newbie question .... are there tests to show whether too many cells have died or are only damaged?

Are there any ways to tell or rules of thumb to suggest what camp you are in?

If you had to guess, what usually is the general time range one would normally see improvement. Would you stab a guess that after X number of years, one should cut their losses, accept where they are and switch their mindset?

chemo patients don't improve ??
 

Just to clarify ... are you saying you don't believe chemo patients improve much? .... or just you don't see them improve (have information on their improvement) because they don't stick around much on the forum?

I think the trick to to find a reasonable balance between the two. It definitely takes a lot of time to get a handle on what's going on with your body, and what you can possibly do about it. But once you decide what supplement, diet, and general health program is best for you - just go with it and live your life.

Spend some time to check in on the forums once in a while to see if there are any updates, new research, etc.

But always reserve some time each day to just "live your life" to the best of your ability.

Regardless of the underlying cause, I think most of us will have to face the reality that we will never be the same as we once were. That doesn't mean that we won't see some improvement or that some new treatment won't come along that will help. Be realistic - but always keep the faith

What I said is that I don't see chemo patients here staying on and providing information on their status.

They post a short time and leave.

v5118lKftfk I have sent you a PM.

I'm not at the point where I am able to accept that the neuropathy wont get better and to just accept it either.
I live life to the fullest I can, but still wish for my "old legs" back.
I don't think we need to give up hope, researching,trying new things or our time on here to enjoy life with the nerve damage--we just need to find a balance that works for us. For me reading and communicating here keeps me from discussing it with my friends and family.
The hope of new treatments is what keeps me going. I like to think there is going to be a method to regenerate nerves one day soon that focuses on regeneration no matter caused the nerve damage.

As for the chemo PN, I have seen two people I know recover from it, maybe not 100% but enough so it is not affecting them very much.

are the number / types of posts skewing perception?
 

It's an interesting questions what type of pners gravitate towards this forum, what people are likely and less like to chat about.

Just guessing .... Probably newbies with pn that comes on very strong, types of pn where the health care professionals know the least, types of pn that are statistically greater, and then, sad to say, people who really suffer.

Perhaps the types that recover moderately don't stick around to write lots of posts about it.

I wonder how this skews our perception? Perhaps we also don't hear much from the people who had regeneration.

Natalie

I think some peoples pn do eventually recover, if its not diabetic or autoimmune, some people get pn from injury or infections. I dont know the extent of damage caused by chemo drugs, but it could be that its reversible or at least the symptoms stabalize to the point they dont need drugs.
i can tell you, that docs are aware of PN but not how to proceed to diagnosed different kinds that are outside the most common causes.
My Pn was mainly tingling, pins and needles,prickling, jabs of pain, twitching, tickling, but not as severe chronic pain as some of you guys have described. i would say this started to die down, but i do not felt like 100%recovered, i still feel my nerves are still wierd.

Do you know the origin of your PN?

Are you able to do most everything you want? i.e. stand, walk ?

Is it more than an annoyance ?

In my experience--
 

--which is admittedly anecdotal--but I am involved on this board and others and with several neuropathy support groups--there is a lot of variation in the amount of recovery that people who have chemo-induced neuropathy get.

Many do get some recovery, but a lot depends on the chemotherapeutic agent and the duration and number of course of chemotherpay needed. The heavy metal agents, for example--platinum based drugs and the like--are notoriously neurotoxic (though don't count on an oncologist to tell you this going in). They are very powerful agents designed to disrupt the DNA of cancer cells and they do a good job of doing that to nerve and other cells as well.

The immunomodulating and monoclonal antibodies used for many blood cancers can also be neurotoxic but seem to be not quite as bad as the metal based drugs; the mechanisms by which they act are somewhat different, and, at least from speaking to people who've had them, their neuropathies on average tend to be less severe and they seem to recover more fully.

Of course, while chemotherapy is going on one should be doing everything possible to promote nerve maintenance and repair, from exercise to judiciously chosen supplements (likely essential fatty acids, methylcobalamin B12, probably some co-enzyme Q10, maybe others) to good diet.

So when do we decide that the cure is worse than the illness? My brother in law and his sister both developed the same type of cancer, I forget what it was exactly but he went for the full medical fix and she refused and just accepted palliative care. He had a hellish time of it with amazing back pain and neuropathy among other nightmare symptoms of pain. She on the other hand had very little pain as the cancer progressed towards killing her. Basically she just wasted away and got progressively weaker. The major pain came from the cure and not the cancer it would seem. And he died all the same but knocked out with the heaviest pain meds.

Not all cancers may be like that but many doctors say they would never undergo many of the treatments they prescribe. IMO that's criminal behavior. There used to be a thing called the hippocratic oath but that has turned into the hypocrisy oath.

My cancer was very borderline whether I needed chemo at all.

If I had it all to do over again, I probably wouldn't do the chemo.

Here's an interesting story of people who opted out of medicine and subsequently lived until their 90's.

http://www.nytimes.com/2012/10/28/ma...nted=all&_r=2&

That's quite interesting. I've become convinced through experience that lifestyle and emotions are BIG players in health. Living a simple and stress free life promotes joy and healing IMO. We have lost that skill in this country of fast cars, watches, bills and mortgages, computers and TV etc. Look at the faces on the street. STRESS is screaming out from their faces. And look at us here, stressed and feeling like we are in a maze to find some help. Doctors are suspect and the big Pharma that owns them and tells them what to think and do by basically bribing them. I guess I'm on a rant. :winky:

However I didn't just figure this out yesterday. Now I'm in the system and they want to throw everything at me. I do my own research and I've refused 80% of their suggestions. Besides neuropathy I have something that is causing severe and somewhat rapid weight loss. I have refused all invasive investigation into the cause. I read the possible side effects and I couldn't live with them. I see the phrase "small but significant" when it comes to possible hellish side effects or errors. I'm not risking that as it doesn't hurt to this point in time. Neuropathy hurts! I'm fine dying without much pain as opposed to living with lots of pain for the rest of my limited existence. And self delivery is never out of the question but that is another road filled with misinformation and something one must judiciously study to be successful at. Life is always challenging at least in a culture such as this.

Best wishes
 

Despite all that is happening to you, you sound quite astute and strong. Sounds like you are really taking charge of your healing.

Best wishes. :)

Thank you.:hug: I have. I'm taking charge of every aspect of my life now. Even possibly when and how I leave it. I want this to be my life not someone else's drama in which I'm not playing the leading role.

hear hear !!!
 

I think you have already won the real battle. :)

Maybe, my life is scary stuff now. I'm just an animal and animals have a fear of death. But I'm working on it to the best of my skills and courage. In the courage area I'm no expert.:confused:

Patrick, your supportive and positive answer is so needed. I have sudden onset wrist and foot drop over the last 2months which has been devastating. It is nice to hear someone say "anything is possible" and I am so glad I found this group in my darkest hour. Thanks.

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Thanks, and I am usually a pretty negative person. :D I know people don't always trust doctors but one thing both of my neurologists told me is stay positive. If you're someone who prays, pray hard, if you meditate, do that longer, whatever. Much like recovering from cancer positive outlook does help the body. There is actually scientific proof of that. We're here a short time in the grand scheme and as bad as the pain from this is there are always those worse than us.

Stay strong!!!! ;)

Thanks.

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