[daisydc]

Thank you for the quick response. The reason that the costs were so prohibitive was that both my sister and my first cousin have MS. The neuro's here were so convinced that I had MS that no stone was left unturned in the testing. Which by the way was all inconclusive. The MS clinic in Rochester NY thought I might be one of the 1% of patients who do not show MRI signs but still have relapsing remitting MS. I have had neuro consults, ortho, GI/GU, acupuncture, chiropractic, massage, Reiki, blood work and detoxification. All I know is the past five years have been very stressful and frustrating.I have been using cyano 1000 mcg 1x week for one year, then once/two weeks and finally once per month. I read and researched all I can on the B12, cyano vs methyl vs hydroxy and the abilities of the body to absorb each of them. I am taking No Shot Methylcobalamin but according to what you have said, not enough. I am also upping my folic acid, not folate but folic acid sold by Metagenics to bring down my homocysteine levels. It is all so complicated. If you take too much folic acid it actually reacts and raises the level of homocysteine which is bad. It is all a balance I guess. My MMA was within the normal range, I think less than 1. When I stop the shots, I end up where I am now with the ugly symptoms that are misunderstood, misdiagnosed and inconvenient to say the least. I have not in the past found methyl in the injectible form. Also when I have the B12 serum levels tested, they are within the normal range, although the symptoms are intermittent, sometimes completely gone and other times like right now that they are pretty intense. To add to it all, my 46 year old sister is dying of cancer. I have learned to never say it can't happen to me.......................

[mrsD]

You can have methyl compounded into injections. The autism community does that. Use a compounding pharmacy.

But I don't think injections are the way to go long term. The body does not handle bolus vitamins well. It wants to excrete them.
B12 is carried into the CSF and is also stored in the liver also.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488275/

For about 100 dollars you can have a DNA MTHFR test to show if you have trouble methylating folic acid and B12. There is a special folate called l-methylfolate that bypasses this genetic error which occurs in about 1 in 10 people. It is in the RX vitamin Metanx and also OTC as MetaFolin by Solgar in 800mcg dose. There is a discussion right now on our forum here about it and the failure of a new product posing as an equivalent generic. I have more details there.
http://neurotalk.psychcentral.com/thread114302.html
It is also available RX in a very very high dose of 7.5mg as Deplin for mental depression. Regular folic acid has to be methylated in the body before it becomes useful and active.
If one has the gene polymorphism failure, regular folic acid does nothing.

On that thread I discuss the problems of TOO MUCH folate as well.

Many of us here do very well with once a day oral B12. The trick is to take enough, and to take on an empty stomach.

[daisydc]

mrsD:
Thanks for the valuable information and links on this subject. I have started 5000 mcg orally of methylcobalamin daily, upped my calcium and magnesium, seperated the folate from the B12 and also doubled my Vit D3. I have suffered from severe anxiety related to the B12 deficiency and may be one of the rare cases that actually had a psychotic episode that has no other explanation than the B12. It is very scary and so completely out of character for me, it almost sent me over the edge, literally. The only possible reason for the mental dysfunction that we can come up with is the B12 issue. And it came out of no where. Although I am under much stress with my sister dying, it was not any more than usual. I cannot find literature that discusses the symptoms of someone like myself that has been treated for five years for this disease, but still has flare ups and depletions along the way accompanied with physical and psychological impairments. Is anyone else having similar things happening to them? I was under the impression (wrong of course) that once you started treatment, the symptoms would disappear and the neurological and psychological damages that have been done would be repaired. Or at least I would not get worse. I have read many studies about the irrational and psychotic behaviors of subjects low in B12 that are fully rectified with treatments. I am very interested in meeting with my local health care providers and giving them a presentation concerning my case. I am lucky enough that I have professional relationships with them and they really will listen to my story. There is certainly enough information out there, it is just not getting into the right hands and the right minds. I appreciate all the information and help and will continue to pass on any information I find on the subject.

[mrsD]

I love it when people pass information on to others, esp doctors.

Since they won't learn this for themselves, I guess the patients have to teach them?

There was an episode on the Discovery Show Mystery Diagnosis, about a poor woman who had terrible symptoms for 10 yrs, including poor balance, vision changes, panic attacks, etc, which totally changed her personality. (they didn't go into "psychotic" but it could be possible I think). She saw a show with a rheumatologist on it, and in desperation went to her, and was quickly diagonosed with B12 deficiency. (her level was around 200). None of the many doctors she consulted for TEN YEARS found this cause!

You will probably need B12 for life. Don't be tempted to stop it when your levels get better-- some people do and as a result they relapse.

I'm glad you are feeling positive now, and I hope you continue to spread the word and improve!

[daisydc]

mrsD:
None of the B12 symptoms have really scared me yet, the tingling, tremors, mind fog, pins and needles everywhere, but this anxiety and terrible mind games that I am going through are really scary. I don't know how long I can hold out without help of some kind. I have had it twice since November. My therapist is aware and so is my family and they hope I make a complete recovery. My doc wants me to take an SSRI (LEXAPRO) for the anxiety. I don't know what to do anymore. I think the high levels of B12 can also make you jittery and nervous. I am holding on by just a small thread. Any help would be appreciated. Thanks so much from someone who really understands.

[mrsD]

There is a condition, which BTW is not rare, called Pyroluria.

It can be misdiagnosed as mental illness. Estimates are that 10% of people can have it...and it can cause severe anxiety and mood swings.

Please read this:
http://www.drkaslow.com/html/pyroluria.html

[b onna]

Thanks for ALL your help this morning, MrsD.

I'm waiting for my vitamin order to come in and will make sure I ask my neuro what my B12 number is when I see her in two weeks, if not sooner. I hope the tests come in quickly so I can get in there quickly and start being proactive to get this under control.