[tshadow]

Reprinted from peripheral neuropathy post

I had severe muscle weakness....but mine came in mini steps.
It all began 4+ years ago right after I'd finished a second infusion of Remicade for Crohns disease.
Then shortly after that I had a double bowel resection, my rotted intestines AND an AVM, anuerism like mass that caused severe anemia.
They wondered if I'd caught something from all the blood transfusnions, lost count after 25 I'd received during a 2 year period of time.
But after the surgery...I got much worse with muscle weakness....so bad that I was then totally bedridden! Needed full time care just for basic grooming. I could only sit in the corner shower seat while others soaped me down....then crawel back into bed to have others dry me off.
I needed a walker just to get to the toilet...but wore Depends most of time, I was THAT ill! That was the summer from H3LL!
After the bowel resection my muscle weakness just increased. I had every diagnosis imaginable...from NutCase,Polymyositis,Meneirs, MS to possible ALS....even sent to ALS center here on Pill Hill...what a nightmare that was!
I wanted to die....even to the point I made an attempt...too fatigued to pull the trigger! ...I gave up, went back to bed!
With increasing weakness, other symptoms began appearing such as burning lips and total loss of my balance. I had to hang onto walls just to keep from falling my balance was that off. I drueled mostly too fatigued to swallow! Then the burning began in my hands and feet....EMG and NC test showed classic sock glove pattern moderate levels of PN....was scheduled for more muscle studies and muscle biopsies....I was too fatigued to even allow anyone to drag me to those appointments....I'd cry and cancel all of this!
No one can even begin to understand this kind of fatigue!
And I was sick of the dimissive roll eye's received by Neuro's when I'd ask if my burning lips could be some sort of vit or min def....well duh people!
Didn't they know that anyone with long standing bouts of D-rea causes mal absorbtion! And 2+ years of deadly low anemia played a part in this as well, and Remicade AND surgery strips your body of vitamins and minerals!
No S Sherlock! But the PN burn, fatigue and now spinal cord pain whenever I put my chin to chest....felt like shock wave and burn down my spine...doc said...well...just dont do this! Well duh! Too many stupid "Sherlocks" each pointing in other directions.
One day my DH gave me a laptop...at least I could muddle thru a few web sites searching the cause of PN as I'm non diabetic....I wanted to know "WHY"!....then I found a web site where Rose talked about Methyl B12, simple vitamin deficiancy may be the cause of what was going on with me.
Could it be? So glad I took her advice...within 10 days I miraculously got out of bed and did a load of laundery when my care giver came over! OMG! After half a year of 100% bedridden and taking just a few tablets under my tongue, OK...it was more than just a few! It can't hurt you...so I was eating them like candy after my husband had purchased a few bottles for me that Labor Day weekend.
I hug Rose every day of my new life! That's what was wrong! B12 deficiancy, big time even thou was told it was normal level...232 is normal level? Yeah doc....and wearing a white coat makes you smart! NOT!
My walker sits in the garage collecting cobwebs now and although I'm not totally cured/well....at least I'm on the road to wellness and no longer suffering horrible fatigue, and PN is almost 90% gone....EMG back to normal!
Could it be?......YOU BET! I have zero doubts! Not one single shred!
Blessings, cheryl

Talk about bravery! This just totally rocked my world - made me grateful.

Also, I wanted to check out the site she mentioned.

http://roseannster.googlepages.com/home

Now I need to research this new area. I think the nerves are all related in that if one set is ill, then others may be or soon will be, from the same factors. If vitamins can help our nerves recover, then I'm all for it. (Being aware of some vitamin toxicity of course.)

God bless you all.

[trixlynn]

Once again it must be different for each of us. I take Methyl B12 and unfortunatley I have seen no reduction in symptoms. I take a great deal of vitamins and minerals all aimed at nerve, joint and muscle pain. They don't take the pain away, but they are good for me so I keep on going.
Trix

[johannakat]

i have found that taking b12 adn bcomplex too much makes me quite jumpy and irritable, or weepy. I am the only one i have found that gets the weepies, but have run accross others that get irritable.

I take a sublingual b12 and a regular b complex about 1x per week each, on different days. it helps my energy level but doesn't make me nutters.


i am a big meat eater, though, so i probly get lots in my diet and don't seem to have any malabsorption issues.

i have recently started drinking Mon Avie...expensive, but i like it, and i do feel better already, after a week.... going to give it a littel more shot. If anyone else is interested in Mon Avie and wants to get bulk purchase discounts I'd be interested in teaming up to get the buying power.
I am also looking into other sources of acai berry juice or freeze dried powder.

yes, vitamins are a good thing, even though getting your nutrients from food is better, vitamins are way better than not getting it!!!

[tshadow]

I have not been a good eater because of the autonomic neuropathy that began developing to the point that I couldn't digest any food.

My diet then became stuff like broth, tea, a little organic yogurt, free range organic egg, Gatorade and anything else I would just vomit back up right away, or up to three days later - same food, not digested. Totally GROSS. And I was not passing the food either. It would sit in the upper colon, not affected by suppositories.

So I decided to do something crazy. I have been craving m&ms, dried fruits and different nuts, so I went to a health food store (or regular store) and bought all kinds of mixtures so that the nuts and fruit were really exotic and exciting. I ate them and what happened is nothing short of WILD. I didn't get sick. I actually passed them just fine. I got higher energy. And then even wound their ways into my dreams of taking them on heights or nature walks (in my dreams I can go anywhere.) I think my skin looks brighter and more alive.

I also started taking the Vitamin 12 which was suggested by the PRN poster.

I believe the PRN people and we are more connected than we once thought and our beneficial practices should be shared...But I'm still mostly bedridden still...

[mucker]

My doc put me on foilc a few weeks ago i don't feel any different but when she had done my last blood work up it came back that i was really low on that and being so inactive i now have to take cholesterol pills. But when i asked about the foilc she said that it helps the nerves heel. Until then i never heard of this i knew that pregnant woman need it but did not know why. As far as vitamins go the only time i take them is when i don't eat right which has been a lot because of my depression. But i also believe that one can overdose with all these vitamins and supplements. But i wonder why they help some and not others?

[Jomar]

I think it has something to do with our internal systems , the PH, and maybe genetics or even where our ancestors came from.

Maybe I only think that because of the book I read "Eat right 4 your blood type" - it explains all that or their theory about it anyway.

After reading it I realized why I feel cruddy after I eat certain foods - they were on my bad list!

But in general I think that so many foods are processed and out diets are never perfect anyway - we need the extra boost that Vitamins & supplements can give us.

The RDA {recommended daily requirement } is pretty much the minimum that we need to function.
I used to read a lot about this stuff when my kids were little.
One thing is that there are fat soluble vitamins and water soluble.
You could overdoes on fat soluble but it is way beyond the RD limits.

[LinJane]

This has been very interesting to read. I do not eat a healthy diet. I also do not take vitamins. I am so busy with others in the family I never think of myself. I have been told that I am difficient in B12. I told the doctor I would start taking it and I haven't. I set my childrens vitamins out each morning and, for some reason, I do not take any. I think it is laziness but I don't know. In the morning I don't like to swallow pills. Bad excuse. I think I need to take a look at my diet. I am not really over weight. Maybe 5-10lbs. I am just so overwhelmed with work, family, life, that I don't take care of myself. Oh well! Linda

[tshadow]

The B12 is chewable, per the directions.

We also take flaxseed oil in our orange juice in the AM.

But this new mix of exotic nuts is weird, it was a craving, and so I went with it.

Before I got sick, I was vitamin / supplement lady in the office, I was the go-to office pharmacy. So I don't think I GOT TOS because I was deficient, (I was already on my thyroid med also),

I am just thinking that now that I am sick, adding the b12 and a mixture of nuts might be giving my body what it needs now.

It is good to know which of your vitamins are water soluble (thus you just pee out the excess) vs. oil soluble which can continue to cluster in your body and build up to a toxic level, such as Vitamins E, A and D, etc. So you don't want to go crazy on mass quantities of those oil soluble vitamins.