Need mrsD help with Small Fiber Neuropathy.
 

I am a 79 year old male and do not have Diabetes. Unknown to me I have had Small Fiber Neuropathy sysmptoms for about 10 years. Unfortunately I suffered with Sciatica pains at the same time so the SFN pains were masked. On March 7 I had L3, L4 & L5 fused and the next day I still had pains and numbness in my lower legs and feet. After a few visits to a Neurologist, taking all sorts of blood tests and finally getting the small fiber biopsy, I have been diagnosed with Small Fiber Neuropathy on 6-1-12. The Neurologist gave me some Metanx samples to take 2 times a day.
During the month prior to the biopsy the Neurologist said he suspected I had SFM, so for the past month I have been constantly visited NeuroTalk looking for help.
I have read mosts of your posts going back 2 years relating to various supplements as a substitute for Metanx.
Here is what I intend to purchase because purchasing Metanx is financially out of the question:
Puritan's Pride Methylcobalamin B-12, 5000 Mg, 1 per day, 1 hour before eating breakfast.

Puritan's Pride Pyridoxal-5-Phosphate, 50 Mg, once a day.

iherb.com Solgar, Folate Metafolin Folic Acie, 800 mcg, 1 per day.
Puritan's Pride only had Folic Acid.

Please let me know if this is OK.

It would be nice if there could be a Sticky for just SFN, I was really getting confused while trying to find specific information.

Thanks

Welcome to NeuroTalk:

Looks like you figured it out well. That is the OTC equivalent to Metanx. Except it is the lower dose of methylfolate, which is okay. MetaFolin is hard to find, because for a while Merck was not selling it to OTC outlets. Now that has changed.

Were you ever tested for B12 levels? Do you know the actual results?

Metanx will work if your issues are based on low B12 levels, which lead to nerve damage over time.

The fact that your PN didn't progress to other areas over a long period, and remains the same implies perhaps something
else may be going on.

You could just start with the B12 and not use the other two in the beginning. This would save you some money. The B12 is the most useful I think for most people. Those with DNA inability to methylate folic acid would need the methylfolate in the Metanx as well. But at this time you don't know if you are one of those folks.

Did you not feel any numbness in the feet at all before your fusion? If you can think back to when your feet started up, what was going on with you then? Drugs? Statins? Vaccines?
exposure to toxins? illnesses like severe flu or infections?
Chemo? Do you use acid blocking drugs often or every day?
About 30 percent of people lose stomach acid with age, and this is called achlorhydria. When this happens, the B12 in food is not broken down for absorption, and low levels result. It can be due to aging, autoimmune destruction of the parietal cells that make intrinsic factor, or due to acid blocking drug use.
So in older patients low B12 can become quite common.

Hi mrsD,

My PN did not tell me the B12 numbers, he said he did a more inclusive test, I think he said he did the methylmalonic acid test or something that started with an "M", forgive my ancient memory!

The initial right leg numbness and pain started in April 07 after I had a Foraminotomy and Laminectomy on my right side due to Sciatica, that PN said it would go away in a few months, it never did!

I had been using 40 Mg of Statin for about 16 years and my Internist put me on 80 Mg for a few years and my Cardiologist changed it back to 40 Mg a few months ago.

I had been using Rolaids and Tums for about 40 years and my Internist put me on 20 Mg Omeprozole about 20 years ago, it works great.

I had bladder Chemo in 84 and 05, injected into the urinary tract.

I was diagnosed with Raynauds syndrome in my feet and hands about 30 years ago.

Here are my vaccines:

1/?/99 VA Pneumonia
12/11/06 VA Flu Shot
12/?/07 VA Flu Shot
12/?/08 VA Flu Shot
06/18/09 VA Zoster (Shingles)
09/30/09 VA Tetanus shot
12/21/09 VA H1N1 shot
11/28/11. So. Med H1N1 shot

My current PN first put me on Gabapentin and then Amytriptyline during the past month, both gave me some nighttime relief but gave me severe constipation. I gave them both up and started 2 tabs of Tylenol PM while waiting for the Biopsy, at least I was able to get a pretty good night sleep! The daytime pain and numbness is tolerable and my legs and feet don't burn.

The current PN seems to know what he is doing but I look forward to your comments. At least I can communicate with you without an appointment.:)

Thanks for that list...it is really helpful.

What I see foremost is STATIN use which can cause neuropathy.

So were you taking CoQ-10 to offset this risk at any time?

Statins deplete CoQ-10, which is in the enzyme system that makes cholesterol. We now know that this is a serious thing,
and takeing CoQ-10 may help.

Lots of vaccines. Vaccines have shown to cause nerve damage.

The topical Chemo to your bladder...not so clear. IV chemo would be worse. That is not to say, the chemo didn't damage some mitochondria and add to your PN problem.

Circulation issues, like Raynaud's, can limit oxygen to the feet, toes and hands. When this happens, toxins accumulate and oxygen is lacking. This alone can damage nerves.

At this point I have to think about your post some, a day or two at least.

But for now, get any results for the B12 tests if you had them.
This is a starting point for many people. To be honest, at your age, doctors are not likely to test much or share with you.

If you use our search function for "cholesterol" you will find some posters damaged by STATINs and they are also all over the web. This alone is a problem for you. You should discuss this need with your doctor at this point. There are many sites with medical advice to elderly to no longer use Statins.
If you Google "statins elderly" you will find Dr. Golomb:
like this one--
https://www.statineffects.com/info/

I hate to say this, now, but you may be too far along with damage to recover.
So don't spend alot of money yet, to get a remedy. You could do the B12 because it is so inexpensive. But don't do anything else yet, until I think about this further.

OK I'll get some CoQ-10 which I have never taken and also Methyl B-12 for now and wait for further info from you.
Thanks

There are two types now of CoQ-10... the oil based gelcaps, and the new water soluble forms.

The oil based gelcaps, have soybean or a similar oil, and have
limited absorption. It can take a long time to get positive results with them.

The new water based type, is more easily absorbed, and prices for it have come down recently considerably.

This is one example:
You could start with this one twice a day:
http://www.epic4health.com/qgelfor30ofh.html

If you buy the oil based ones, you'll have to take 300mg a day.

There is also a newer active form called ubiquinol. One company makes it called Qunol, and is sold at Costco at quite a discount. If you have access to Costco, one of these a day would be a good start. 120 caps ran me about $30.00. That is a 4 months' supply.

So for now do the methylB12 and some form of CoQ-10.
We'll think of what else might help, after you start these,
and that would depend on what your response is.

Reply to mrsD
 

I purchased Q-Sorb™ CO Q-10 100 mg (60 Softgels) from Puritan's Pride last night before I received your latest post. I was thinking these are the quick absorption type but the website only mention that they softgel.
How many should I take per day?
Thanks,
Don

I'd take 3 a day of those Puritan's ones.
If they have oil in them, taking with a small meal may help absorption.

Some people do get response from this type, but it typically takes at least a month or so.

Hi mrsD,

Quote from your previous reply:
"There is also a newer active form called ubiquinol. One company makes it called Qunol, and is sold at Costco at quite a discount. If you have access to Costco, one of these a day would be a good start. 120 caps ran me about $30.00. That is a 4 months' supply."

I just found "Qunol Ultra CoQ10 - 100% Soluble Coq10 100mg on Amazon. Is this truly Ubiquinol?

Thanks Don

They have that one and also the newer Ubiquinol form.

http://www.costco.com/Browse/Product...rodid=11630572

Doesn't really matter at this point. It is the water solubility that you need to have to decide your doses.

http://www.qunol.com/

Some sites say there is not much difference. So you can choose which you want to try.

Another water soluble one is Q-gel:
http://www.epic4health.com/noname.html

If you get a water soluble form, you probably only need 100mg a day. Of either type. It is your choice. Things these days are complex with lots of competition.