Please Help, Neuropathy Getting bad.

[lampkld2]

Dear Everyone,

I would love some feedback please!

Started with sock and glove tingling. Has progressed intermittently relapsing and remitting over the last 6 months to twitching and recently discernible weakness bilaterally especially right side. Early EMG normal. Positive initial response to both Zinc and Fred's B12 protocol, but both eventually exacerbate things within even the first 6 hours. ( is this detox, or are they causing t cell creation which attacks my nerves????). Chelation I think maybe helps during things episodes, but hard to tell because of fluctuation. The episodes don't always correspond with brain fog or thinking issues, but I get these intermittently as well.

COMT and MTHFR Homozygous snps.

I'm worried, Is this ALS? Would any of these treatments that helped then hurt (Zinc, activated Bs) have a mechanism for worsening ALS or inherited neuropathy? I also have Ehllers Danlos Syndrome, CFS type stuff and possible mercury issues as well as chronic sinus stuff.

I'm in a foreign country and i am trying to figure out if I should cut my trip short and go home to a neuro??? Pleases assuage my fears and tell me its likely just detox that i opened up and now it is happening on its own! I hope its not ALS very scared.

Thanks for any and all help!

 

[leaves]

please get your b6 level tested. B6 toxicity can cause these symptoms. Many people seem to have a problem to excrete b6 and to converge it to p5p. then it builds up in the system. i have very high b6 levels also.
as to treat neuropathy; authia cream, acetyl-carnitine, methyl b12, lions mane and r-lipoic acid may help you
good luck.

 

[lampkld2]

Thanks for your reply Leaves.

My serum b6 was high, but it was a month after supplementation so doc though my initial neuropathy was just taking too much B6... but i was only taking 100 mg! Maybe i do have conversion issues, but I thought it only caused sensory neuropathy? How has your experience been? Is it also exacerbated by Zinc? Do you have twitching and weakness? does Riboflavin and Mag help? Have you tried p5p?

Also I have mild KPU which I though would get rid of the b6...

 

[aprilk1869]

If you're getting worse pains from Fred's protocol it might simply be a case of "intensification of symptoms/start-up" before things get better.

Are you taking any copper with the zinc? Copper deficiency can cause neuropathy too. It might be helpful to get a hair analysis to get a better idea of what's going on.

Also, you might want to try some DMSO gel on your skin. Apparently in the Netherlands 50% DMSO gel is used on patients with Complex Regional Pain Syndrome (CRPS) with good results.

 

[leaves]

Thanks for your reply Leaves.

My serum b6 was high, but it was a month after supplementation so doc though my initial neuropathy was just taking too much B6... but i was only taking 100 mg! Maybe i do have conversion issues, but I thought it only caused sensory neuropathy? How has your experience been? Is it also exacerbated by Zinc? Do you have twitching and weakness? does Riboflavin and Mag help? Have you tried p5p?

Also I have mild KPU which I though would get rid of the b6...

yes it is possible you have conversion issues. High serum b6 is very bad for you. In general if you have numbness, that is a negative symptom, i.e. progressing neuropathy. If you have stinging and pain, that may also be from healing nerves. Do you respond to the hammer knee test?
I tried p5p but had the feeling that this was bad for neuropathy too. i think I have low p5p because of other biomarkers but probably due to an error that causes me to not maintain suffucient p5p, i suppose it converges too much to pyridoxal or something. too much zinc can also be neurotoxic, I wouldnt take more than 30mg. Not sure if the ribo and mag help here, sorry, i am still struggling with this too.

 

[lampkld2]

I would try enteric coated p5p. I heard some conjecture that regular p5p may be broken down into B6 in the stomach.

Also I believe MG and riboflavin help the conversion.

I don't think this is my main issue however, because I am also having motor neuropathy... i hope it is this simple though.

 

[leaves]

ive heard stories from people getting b6 toxicity from enteric p5p also; see http://b6toxicity.blogspot.com/2011/02/my-vitamin-b6-p5p-story.html
id stick with active ribo sublingual, and liver support like milk thistle
btw make sure to see a good neurologist once you are home. Should take this seriously.

 

[Francelle]

How long are you planing to be away? Even though your illness picture or symptom presentation is similar to mine I quite frankly had little luck with neurologists. The second neuro I went to did eventually do quite a few tests but I think it was only because of my persistence. Of course you may have a lucky strike first time up with a good Neurologist.

My EMGs were normal too. Small fibre neuropathy does not cause abnormal EMGs, however large fibre neuropathy is more likely to cause EMG changes. Small fibre neuropathy can be tested via IENFD biopsy (intraepidermal nerve fibre density).What I have yet to elicit is whether the neuropathy common in M.E./CFS is a true small fibre neuropathy or some other type of neurological pathology.

I think we all wonder about the ALS scenario at the outset of all our puzzling symptoms. Its like no-one out there is rushing to either put all our symptoms together or either admit to what they actually know we have.

What type of EDS have you been diagnosed with? There are some interesting connections between M.E./CFS and connective tissue hypermobility.
http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Article-2010Haavisto-Joint.pdf

http://forums.phoenixrising.me/showthread.php?4985-Ehlers-Danlos-OR-joint-Hypermobility-Syndrome

http://sacfs.asn.au/download/autonomic.pdf

Although this paper, http://www.ncbi.nlm.nih.gov/books/NBK1279/ seems to infer that perhaps the real diagnosis, in some cases, should in fact be Ehlers Danlos Syndrome Hypermobility Type and not Fibromyalgia or M.E./CFS.
(Look at the paragraphs under Natural History).

Anyway so much for my rant. Hope you get some answers soon!

 

[lampkld2]

If you're getting worse pains from Fred's protocol it might simply be a case of "intensification of symptoms/start-up" before things get better.

Are you taking any copper with the zinc? Copper deficiency can cause neuropathy too. It might be helpful to get a hair analysis to get a better idea of what's going on.

Also, you might want to try some DMSO gel on your skin. Apparently in the Netherlands 50% DMSO gel is used on patients with Complex Regional Pain Syndrome (CRPS) with good results.

Thanks for your help... I had high copper levels serum and hair. Also low zinc. so I don't think that is the issue. The neuropathy happened too quickly.

Also I hear that about the symptom intensification, but things just got so so bad with tiny fasiculations and brainfog and a general feeling of toxicity that i just had to stop. I'm going to Try some ADb12, hopefully its just a simply deficiency of that vitamin. Also weakness is a new recent symptom.



Leaves-

Thank you. Scary stuff. Where do you find active ribo sublingual? How has it worked for you?

Francelle and or Rich or Fredd-

That is alot to chew on...But i know for sure I have MTHFR and almost surely mercury issues so hopefully my symptoms are treatable and not coming from my untreatable mild hyper mobile EDS.

Since many patients with hypermobility type have unidentified genotypes and other seemingly non collagen related symptoms perhaps the hyperlasticitiy is only one symptom of a more widespread systemic condition such as hypomethylation or low SAMe levels? Is this possible?

Thank you for all the info, I'm going to churn through it.

 

[aprilk1869]

Also I hear that about the symptom intensification, but things just got so so bad with tiny fasiculations and brainfog and a general feeling of toxicity that i just had to stop. I'm going to Try some ADb12, hopefully its just a simply deficiency of that vitamin. Also weakness is a new recent symptom.

How much potassium are you taking?

 

[lampkld2]

I stopped the protocol about two months ago to focus on chelation first. During the short time on the protocol (2 days) time I don't think I took K....

Would zinc also increase need for K?

Now I occasionally take 1-200 mgs a day, but I'm not doing any methylation treatments.. Could I still be hypokalemic you think?

Thanks for helping me work through this I appreciate everyone's feedback!

BTW I'm going to be away for about another month.

 

[Mark]

Started with sock and glove tingling. Has progressed intermittently relapsing and remitting over the last 6 months to twitching and recently discernible weakness bilaterally especially right side.

Just to offer a slightly different perspective...

You say it started with sock and glove tingling. That's very familiar to me, my neuropathy always starts with new or old clothes suddenly becoming irritable. For me, what works best of all is to stay on top of identifying which clothes are causing the most irritation, and to get rid of those as soon as they start causing problems. Unfortunately this is easier said than done, and it's expensive. But the clues right at the beginning of a relapse have often been crucial.

Over the last year or so, I've been getting steadily worse again with neuropathy, and struggling to find any new clothes to replace the t-shirts and socks that had begun to get irritating. About a month ago, I had yet another try to find some new clothes I can wear without irritation. It's always a nightmare, shopping for clothes, because the reactions are somewhat cumulative and have effects for quite some time after exposure, so once I've tried on a few shirts and trousers, my whole body is so sensitised for the rest of the day and it becomes very difficult to tell what I'm reacting to. Anyway...what I discovered by the end of an arduous day staggering from one shop to the next, getting steadily more and more worn down, was that almost nobody is selling 100% cotton garments any more because the price of cotton has gone up a lot over the last year. But: I did eventually find some 100% cotton, in M&S, and I bought up a full new set of clothes there...and ever since, my neuropathy symptoms have eased dramatically - relief at last after a year of deterioration!

That's all a very personal experience, and no doubt other people's experience will vary. Even some of the 100% cotton stuff still sets me off...but my own experience is quite consistent: what works best is a zero tolerance approach to garments that set off tingling and itching sensations, and if those contacts are left unchecked, the neuropathy gets worse and worse in a cumulative fashion until I find safe havens and clothes that I don't react to.

Your mileage will probably vary...but I hope this is helpful to somebody out there...

 

[Sing]

I was diagnosed with small fiber neuropathy via the skin punch (biopsy) test, after several years of increasing clothes sensitivity and numbness in my extremities. SFN is apparently common for Fibromyalgia and ME/CFS--I didn't know this until a neurologist had me tested and then I read up on it. I don't think there is any cure--not that is generally known--but good management and pain relief for the symptoms. SFN is commonly seen with Type 2 Diabetes after a while, so you know it must be related to metabolism, diet, endocrine balance, etc.

Mark, you and I have talked before about the clothing issue. There was quite a funny thread about it a long time ago. 100% Pima cotton works for me. Some other cottons are too harsh. And fabrics like fleece which seem soft don't work at all either. I look for Pima cotton or very soft cotton in used clothing whenever I can, because it is a whole lot cheaper if I make mistakes. But so far, Pima cotton products have always worked well.

 

[dannybex]

If this came on suddenly...

Hi Lampkid,

Just my two cents, but if this came on quite soon after taking b6 and/or zinc, I would stop them both and see if things calm down.

Especially if you had some testing and it showed high b6 levels, then that would suggest to me that you don't need any right now and/or you may have trouble converting it. And as Leaves mentioned, riboflavin (b2) is supposed to help that conversion:

http://onibasu.com/archives/am/201265.html

 

[kurt]

I'm in a foreign country and i am trying to figure out if I should cut my trip short and go home to a neuro??? Pleases assuage my fears and tell me its likely just detox that i opened up and now it is happening on its own! I hope its not ALS very scared.

In my opinion, having more sensations like you described could be an imbalance in the nerves from the B12. If you are or were on Fred's protocol, which is very similar to Prof. Pall's protocol for NO/ONOO-, some neurologic symptoms are to be expected. This is because nitric oxide/peroxynitrite levels are adjusting. That will have noticable neurologic as well as vascular effects (NO is a gasotransmitter in the nervous system).

If I were in your situation (actually I have been before), I would just scale back doses until the problem becomes more tolerable, and also increase the potassium chloride, and possibly also increase the other electroytes (magnesium, calcium, sodium).

My own theory (I am on a multi-B12 protocol similar to Fred's) is that as B12 supplementation begins to work, it can expose pre-existing neuropathies that were hidden due to B12 depletion. In fact I suspect B12 deficiency can disguise its own symptoms, so supplementing just reveals what has been going on all along that you could not detect. When neuropathy reverses and bloodflow improves, you logically would get harmless (but maybe annoying) neural sensations.

 

[sleepy237]

Like you I have EDS type 3 possibly over vascular and I too have a lot of neuropathy problems. Last year they had me freaking this year they are easier to manage and may be lessening a little. Thought I would post you this from Jamie Deckoff Jones Blog who also has a variant of EDS her blog is really refreshing and useful. "My early symptoms, in hindsight, were related to sensory and cranial nerve dysfunction, and vasospasm - classic, atypical and intestinal migraines" http://treatingxmrv.blogspot.com/2010/09/more-random-thoughts.html I am starting to think that EDS makes a big big factor in CFS or vice versa. I would say B12. I have heard be cautious with ALA as it can change things from one place and deposit in another - althugh speculation and we are all different in our trial and errors with supplements. Take care ~Sleepy

 

[sleepy237]

PS: It's not ALS.

 

[Tony Mach]

I had tingling (and something akin to numbness) on my legs and it was beginning on my hands (and was getting really awful, making it problematic to use the keyboard or the touchpad). Don't know if it was neuropathy or paresthesia, but what helped me was removing all kinds of carbs from my diet, like leaving out grains, potatoes and milk. Basically I was going for a Atkins/Paleo/Primal diet. Now I eat potatoes again, still no tingling (but haven't tried grains and milk...)

I did this change rather rapidly, but today I would try to reduce the amount of grains and milk more slowly you don't have to go cold turkey. If you change it fast (ala Atkins), you might get faster (and clearer) results, but it is more stressful for the body...

And try to get enough omega-3s, eat fish, if you can.

 

[Freddd]

Dear Everyone,

I would love some feedback please!

Started with sock and glove tingling. Has progressed intermittently relapsing and remitting over the last 6 months to twitching and recently discernible weakness bilaterally especially right side. Early EMG normal. Positive initial response to both Zinc and Fred's B12 protocol, but both eventually exacerbate things within even the first 6 hours. ( is this detox, or are they causing t cell creation which attacks my nerves????). Chelation I think maybe helps during things episodes, but hard to tell because of fluctuation. The episodes don't always correspond with brain fog or thinking issues, but I get these intermittently as well.

COMT and MTHFR Homozygous snps.

I'm worried, Is this ALS? Would any of these treatments that helped then hurt (Zinc, activated Bs) have a mechanism for worsening ALS or inherited neuropathy? I also have Ehllers Danlos Syndrome, CFS type stuff and possible mercury issues as well as chronic sinus stuff.

I'm in a foreign country and i am trying to figure out if I should cut my trip short and go home to a neuro??? Pleases assuage my fears and tell me its likely just detox that i opened up and now it is happening on its own! I hope its not ALS very scared.

Thanks for any and all help!

HI Lampkld,

It is NOT detox. That is a pernicious idea that is blamed for far too much instead of some very real problems.

started with sock and glove tingling. Has progressed intermittently relapsing and remitting over the last 6 months to twitching and recently discernible weakness bilaterally especially right side. Early EMG normal. Positive initial response to both Zinc and Fred's B12 protocol, but both eventually exacerbate things within even the first 6 hours.

It takes several hours after a dose for mb12 to start affecting the nerves. It increases the perception of the damage that has occurred. THIS IS A USUAL START-UP EFFECT. It is a changhe in perception. The nerves are caused to (hypothesis) carry a larger signal or something of the sort by the mb12 and adb12 (similar but different effects) and the damage becomes far more evident. Nerves that may have been numb may develop shooting and electrical pains. One of the things you can do that will give you a better idea of what is going on is learn wot pay attention to what the nerves are feeling. At this point do everything you can to increase the sensation of the nerves. You will then be able to feel the nerves when at full intensity that they are climbing or falling down your legs. Progressing upwards over time is bad, downwards is good Don't mistake going numb as being "good". Increasing pain in all this is the good direction followed by hypersensitivity before fading to more or less normal Part of the problem is that if a person has CNS damage such as I have, and has a tendency for low CSF cobalamin as those with CFS/FMS have, and I have, a person may have enough mb12 for their body but the CNS deterioration may continue onwards just the same. If you have worked up to 20mg a day of Jarrow and Enzymatic Therapy mb12, and 3mg of adb12 each day on the average, and Metafolin without folic/folinic acid, and the neuropathy isn't improving, and that might be indistinguishable from getting worse except to the knowledgeable observer.

Your being able to actually get as much feeling back as you do from a little mb12 indicates that not all the damage is permanent. You still have the possibility to heal a lot of it. If it doesn't "come alive" with tingling and pain with the mb12 it isn't going to heal very much.
Get all your basics in line. It is too overwhelming to have to chase down zinc and D and A and E and C and magnesium and omega3 oils etc. There is enough to work out with the critical factors

 

[DUSK]

First off, I am 26 and I was diagnosed with ALS at 25 years old. But! I don't believe that I have ALS and I'll tell you why.

I've been doing a lot of research lately (after all, my life is at stake). I found that it is unheard of to have an ALS patient with extremely elevated B6 and/or B12 levels. I also found that B6 becomes toxic in large quantities. People with elevated levels develop sensory and/or motor neuropathy. Usually people have sensory problems and not motor problems, but they also have a normal B12 level. So, I believe my high B12 levels are negating the sensory neuropathy caused from the toxic B6 level. That would just leave me with motor problems that look like ALS. Real ALS mainly strikes 40 -70 year old people. Recently, younger people in their 20s are getting an ALS diagnosis. What else happened recently? I believe energy drinks were invented. So, my theory is: People with an unusual form of "ALS" at a young age actually are just suffering from Hypervitaminosis B or Pyridoxine Toxicity. B6 is a neurotoxin, but the body requires a small amount for some reason.

My B6 level: 358, Normal range: 20 - 125
My B12 level: >1500 (off the charts all 3 times), Normal range: 180 - 914

Recent B6 Test: 230, Still toxic but dropping. And, progression of my condition has slowed.

I found in several forums people with elevated B levels complained about dehydration and stress before symptoms occurred. I also complained of those things. So I do believe that stress holds onto B vitamins and since they are water soluble, the dehydration causes them to store. Hmmm... What causes dehydration, stress, an increase of B6 and B12, and is fairly new? Energy drinks!

I believe my way to win is to get the excess B6 and B12 out of my system. Is anyone else going through something similar? I would love to hear from you.

Thanks,
DUSK