Vit B12 problem..needing some help!

RN4Veterans · 07-31-2007, 11:00 PM

My Vitamin B12 deficiency was over 2 years and I was hoping extra medications would assist in repairing the damage. Don't get me wrong, I don't mean mega dosing with cobalamin, but definitely not lowering the dosage like the new physician was wanting to do! I knew that wasn't going to be in my treatment plan....I was definitely frustrated that I could not find anyone here in the states that knew a whole lot about this syndrome. When it come right down to it, the United States is way behind the times even in its treatment plan of cobalamin, the World Health Organization recommends giving Hydroxocobalamin because it stays in the system three times longer than cobalamin (J Pediatr. 1998; 132(1):121-4 (ISSN: 0022-3476) Andersson HC ; Shapira E Human Genetics Program, Tulane University School of Medicine, New Orleans, Louisiana 70112, USA) But I could not even find a doctor in my area that even knew what it was! They were wanting, instead, to stick with the standard treatment, which they learned in med school and not be open minded with any new method.
I've got the book by Sally "Could it be B12: an Epidemic of Misdiagnosis" by Sally M. Pacholok, R.N. and Jeffrey J. Stuart, D.O. They are husband and wife. She had Vit. B12 in the 1980's and they researched this and was amazed on the lack of information and lack of understanding and willingness to listen from the medical community. It is a very, very interesting book. Sally assists many people.
I am interested in this B12 study that you are doing Ron. Can you tell us about it?
Med_help, Complex,Rose,Matt and Ron, as always....hang in there, maybe one day, the doctors will finally hear our outcry and listen and start doing some research to assist us...

rose · 08-01-2007, 05:14 PM

Complex,

I can certainly relate to your frustration. I also incurred damage similar to MS, and have been coping with the fallout without the support.

Some people only stop the damage but do not improve when they get the B12. But it still is possible to improve, and you would maximize your chances for improvement by taking the methylcobalamin form of B12. And, of course, making sure you're getting all other nutrients your body needs to have optimum opportunity to repair.

I also wish someone would have told me what I was going to deal with. I could have planned and had it much better physically and financially, at least.

I cannot speak to what is or is not going on with you. But my second and third years of repairs were probably the worst, and that's saying something because prior to that was bad.

Wish we could sit and visit.

rose

rose · 08-01-2007, 05:22 PM

Matty,

Many people are born with the seeds of severe B12 malabsorption later in life. And I am one who has family evidence of this. My mother malabsorbed moderately, I suspect my dad may have, I developed severe malabsorption, and two of my adult children developed severe malabsorption at a much younger age than I had. I spoke with a researcher, and he said "these things mutate."

Also I have found written material discussing the increasing severity developing in some subsequent generations (as my family illustrates).

I hope he will increase that B12 dose to 1000 mcg. If he malabsorbs severely, or is heading in that direction, that is a much better dose to insure he gets what he needs.

rose

ConsiderThis · 08-02-2007, 09:33 PM

Quote:

Originally Posted by complex

Hi there,
This is my first ever to post to anyone, I felt I must as I am just as frustrated too. I found out the end of 2003 that I was B12 def., actually pernicious anemia. I started taking B12 shots Jan 2004 at home myself and will for life.Unfortunately, the damage was already done. I was 39 years old. I couldn't believe it! I already had peripheral neuropathy, carpel tunnel, tarsal tunnel, optic neuropathy and working on bladder dysfunction. Not to mention what it was doing to my memory and confusion, fatigue, etc. etc. etc. the lists goes on. Did anything get better.............NO. Does it with SOME people..........YES.Unfortunately, it did not with me. I thought I was from Mars cause I kept reading stories of people feeling like they could fly just from taking B12 shots! Well, I am happy for them. I had to quit reading articles as they were not helpful for me. I silently started doing research on my own, never mind different neurology care I have been under ever since. If you haven't been told already, you will be told..... B12 carries the same symptoms AND damage as MS except MS has a lot of help out there and resoureces, WE DON'T. If I sound angry, I guess I am, I am frustrated. This disease can tear a persons life apart as bad as MS and other diseases, yet, it gets NO WHERE! It makes no sense why doctors still do not know how to treat it. For the record, I hope you will not be mis led as I was, if you are B12 deficient and try to take EXTRA B12 shots, your body is NOT going to accept it, it is NOT going to do you any good. You will not absorb it. There are, as you know, different types of B12 def. If you have the same as I , you can not absorb it. Believe me, I have tried this, it doesn't work.
It is July 31, 2007, 3 1/2 years I have been on the shots, my symptoms are worse, the neuropathy is a nightmare, today my neurontin was increased to 2100 mg per day plus starting Cymbalta for Neurapathy as well, not to mention the other 13 meds. I am on, thanks to B12

I felt strongly that I wanted to post to you as I could understand your frustration and I have never done this before and I can only hope that somehow we can one day see a difference in our own doctors here in our own country that do know more on this disease. It is treated like the old TB days! If you search on the internet, as I did recently, I just typed in " doctors that specialize in B12 Deficiency", and blood disorders. I came up with a few. You may have some luck. I hope you do. Neuro's and Internist are usually the best with this although most are limited. If you can ever find an older militray medicine outside doctor, grab him

They have delt with a lot of varities! Believe me.I am seeing only military doctors as my husband is in the service, but one day I landed in the hands of a " military medicine doc" that is usually only for them, he helped me so much and got me on the path to walking and off crutches! But,they work on the outside as well. I know this was long, but I sure hope something in this can be helpful to you. Sugar coating things is not going to help you. If someone would have let me known what I was heading for, I would have probably handled it better. It was very tough and still is. The best of luck to you. I wish you well. Hang in there!
P.S. I chose "COMPLEX" because my docs. always say my case is always so complex

lol, just like you say, I always got to try to laugh about this or I will go nuts

take care!
COMPLEX B)

Hi Complex...

I've read your post twice.. and I can't see where you say how many shots a month you give to yourself.

I know you may well have written it, and I just keep failing to see it.

If you are having a shot a month or a week, I'm not surprised that you aren't feeling an improvement.

I didn't feel much of an improvement, I mean a really significant improvement where my peripheral neuropathy went away, until I had tetanus and was giving myself one or two shots a day.

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
needing OTC med for IBS	dolphin	Reflex Sympathetic Dystrophy (RSD and CRPS)	4	12-03-2010 06:39 PM
A newbie needing support............	Kimster	Chronic Pain	5	04-22-2007 07:44 PM
Needing Reassurance	arrigoar	ALS	10	11-22-2006 10:06 AM

Site Navigation

NeuroTalk Online Support Groups

Vit B12 problem..needing some help!

NeuroTalk Forums