I'm new to this forum but know some here from years past
 

Hi everyone!

Well it's been 12 years now since I first learned I had PN. I use to visit the site Brian Talk a few years ago. I still have PN and it hasn't much changed but feel I need to give the healthy living a better effort then I have been doing so I need advice.

My Info:
My PN is idiopathic and I have had many test and TTS release on both feet
I take 150mg of Lyrica daily
I am not diabetic
My b12 level is on the low end of the normal range
I know about Methy B12
I exercise daily
I'm not overweight more than 10 pounds and I'm losing that in my new plan

Could you kind folks please help me what vitamins like B-12 I should be taking and how much. I just want to follow a good sensible plan that has already be researched by you kind folks. I don't want to spend hours trying to figure this stuff out and really I'm not the bright. Could you folks please cut and paste your daily plan and where I can get them. You know something like this:

DAILY
Fish oil - 2Gm *
Methyl B-12 - 2000mcg *
Folic Acid - ? *



Thank you so much,
Marty:)

*edit.

Fish oil - two 1200 gels= 2400/day
Lyrica 200mgs 3x day =600mgs/day
sublingual Methyl B12= 2000mcg/day
Tramadol 100mgs 4x day = 400mgs/day
CoQ10 (forgot dosage)
Folic Acid (forgot dosage)
Zetia 10mgs/day
RLA (ALA) 50 mgs/day

Hi Marty... I remember you.

Do you have PN only in the feet? Does it move up to the legs, or has it spread to any other places?

Hi mrsD,
I remember both you and nide44.

It has moved to my legs, hands and face. Mostly the hands and face are in the beginning stages with tingling, and some burning. I get deep aching pains in my legs with some tingling and burning. But for the most part it's my feet. Really bad. I can not wear shoes or stand for more then five minutes without the pain level rising to a point I must get off them.

I've had many blood test, those shock test, needle tests (cant remember the names lol) and MRI's.

Since you are not getting better, and it is traveling around, it might be that your diet needs looking at.

Gluten intolerance can cause peripheral neuropathy.
We have a gluten forum here:
http://neurotalk.psychcentral.com/forum13.html
The first post in the sticky has The Gluten File in it. A wealth of information.

I know two posters from the old board who had PN and improved with going Gluten free.
I think it would be worth a trial for you.

Yes I'm going to give the gluten free diet. I think I'm not absorbing like I should. So I'm doing gluten free, a good vitamin regiment and exercise daily. The gulten free diet is going to be hard. :eek: It's a staple in my diet.

B-complex
B-50 1/day
Needed for energy, nerve function, nerve healing. A B-50 formulation is about twice as strong as a regular B-complex. Two B-50s or one B-100 is at the upper safety limit. Take with breakfast so it help your body utilize your food all day.


Thiamine (B1) at least 200mg/day..but some here have used 500mg/day in divided doses. This is inexpensive and benign. Especially useful if you drink, used to drink or have alcoholism genes in the family tree.


I found the above post by David (Wing42) and added the highlighted Thiamine(B1).

I'm not sure if I need to order the Thiamine(B1) by itself or if it's included in the B-complex. Does anyone know?

Thanks a bunch,
Marty

There will be thiamine in your B-complex. Just not a high enough dose to reverse PN caused by dehydrogenase enzyme failures.

In that case you just take 200mg a day of regular thiamine. It can be purchased inexpensively in any drug store, about 5 bucks.
Comes in 100mg tablets.

After 12 years of damage that was ignored, it will be difficult to
reverse that.
If you remove any toxins or things like gluten, you can stop progression, and perhaps heal. But expecting 100% healing is pushing the limit I would think at this time.

Are you exposed to solvents? working on cars, printing presses, etc? Refinishing wood? Continued use of solvents are defatting and may strip nerve insulation with time.

Yes I agree it's a long shot to think I can get all I have lost. If I could get half what I have lost I would be happy. I have learned to deal with pain pretty well so when I get moments when it's less I say wow it would be great to here.

I'm a programmer and do not use any chemicals at home. If I do I wear rubber gloves.

Honestly it's still progressing but not as fast as in the beginning. I've just made a commitment to give it my best for one year of eating right, taking the right vitamins and exercising. I have discovered like many that if I'm able to get my heart rate up high enough (like hiking) the pain is much less. I has to do with blood flow I just don't know what. More oxygen or more drugs flowing though me or something like that.

Thanks for the help mrsD!

Marty

Hi. I am sorry for your continued health conditions. I hope you get relief soon. For me I have PN in my inner ankle/foot/calf of both legs and RSD but for me I take and it changes slightly but anyhow on a regular basis
Magnesium glycinate 400mg sometimes the oxide too
Multi
Calcium with d 2 times daily
Glucosamine chondrotin
Fish oil and flax seed supp 2 of each
Vitamin c
Meds not the as needed ones
Neurontin
Cymbalta
Serequel
Klonopin
As for gluten free if you have a Trader Joes or Whole foods they have a lot of breads and even things like waffles that are GF. Feel better

this makes me curious, usually the decrease in pain with exercise is d/t endorphins....endogenous morphine like substances....which ordinarily have a poor track record with neuropathic pain.....have you had you spine checked? do you really have neuropathy or is it perhaps radiculopathy? being a -programmer - how is you posture?....perhaps some general conditioning would be a good thing....perhaps a physiatrist? good luck

How did you get RSD? My pain was much worse in the areas you have them in but that has improved since my TTS releases but I did get RSD from one of the surgeries. The RSD is almost gone now. How long have you had it? Are you on Serequel and Klonopin for your PN or something else? Those are some serious drugs!



Thanks for the list of vitamins!

-Marty

Yes I had my spine completely checked out, 3 MRI's. Plus it's in my hands and face. All the doctors say my blood flow is good but I've never been to a specialist. I'm just so tiered of all the tests and expenses.

Thanks for the input!

-Marty

We are not sure how I got RSD or PN. The thought was overuse because I was a heavy excerciser but had no fall,surgery,or break. Some other thoughts could be my long history with anorexia but there is no yes this is what caused it.The other ? is why I have PN because at the time I was 28. I have had so much diagnostic testing that there really is no more so it is more about managment. Serequal was rx with my psych for anxiety and sleep. Klonopin by my neuro for my tight muscles. My current pain doc also rx zanaflex but I have not tried it yet as I am increasing neurontin. Wait is TTS tarsal tunnel? I ask cause way back and for me it was a NO but I was suggested that. Anyhow I hope you feel better

Your symptoms remind me of TTS "Tarsal Tunnel Syndrome" The burning pain on the inside of your feet, ankels and legs is a typical sign of this. It's like "Carpel Tunnel Syndrome", you know the ppl wearing the wrist braces or have a scare acrossed the wrists indicating they've had the surger to release that tight tendon that goes acrossed the wrist and nerve. The same is true for the tendon that goes across your ankel bone. The big nurve goes under it and gets compressed. The inside of my arches, ankles and legs use to burn like crazy! Now it's much better but it's been a long 7 years. That's how long it took for the RSD to burn out after the surgery. Now it seems it might of been worse it.

Have youve been tested for TTS?

I to a degreee was tested in the start but would never go under surgery as it is not for my condition. Even if I did have TTS the surgery would not be good for me in my case. it still would be about meds and other type of treatments. I have got too many opinions that stated no and won't even let a doc touch my leg anymore. Actually the air boot they had me in for so many months in the start of this probably contributed to my worsening as with RSD and I think even PN not using the limb causes more problems. If you want you can PM me anytime. I hope you feel better