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)