I know from the old forums that we have some experts here but I never thought I'd be asking the questions.

I have arachnoiditis and with this comes lots of complications including neuropathy which was always associated with the arach. I'm 48. Well they did my B12 level and it's 110. So I'm getting weekly injections, will have a Schillings test in two weeks and will take it from there regarding bone marrow biopsy.

My diet is very poor as I'm constantly nauseated. I rarely eat meat but do well with cheese, fruits, vegetables and milk.Not too good with junk food.

I take omega 3 and magnesium 750mgm rx'd. I take lots of pain meds., but actually went off everything this summer for 2 weeks to see if I could get my appetite back and rid of the nausea, all I got was pain.
I've read about the deficiency and I'm really thinking I've had it for awhile as it would certainly explain alot of the neuro. symptoms. My question I suppose no one can answer but I wondering if it is too late to reverse things.

I'm on injection #3 and haven't noticed any improvement. What I have noticed is that the injection makes me even more nauseated and was wondering if this is common. Going to call the doctor tomorrow.

Anyhow, thanks all for listening, kindly, Alye

will be here soon. She has posted a website she is building with all of her
B12 data. Her levels were really low at one time too...and she can help you
understand the healing.

But I can bet she will say...you need more than those shots.
Daily oral would be a good idea for you and give you more results.

Here link is in useful websites here.

Three shots are much too early to be seeing a lot of progress. It can take months to years. I had just mild damage with a borderline low B12 level of 294( 150-1100). Well, it seemed a little more than mild, but others have suffered much worse. In any case, my bigger symptoms resolved within three months, but smaller things still improved well past the the year mark.

My doctor ordered the schilling test, but the lab called and cancelled because they said they could not obtain the materials needed to run the test .

I have the link to Rose's website on the B12 deficiency page linked in The Gluten File. Just look down the right side bar to the bottom.

Cara

I found Rose's site very informative even if it is still under construction. I know on the original MGH forum she had written alot on this. As I have trouble absorbing lots of info at a time I needed to reference it again.

My original injury was meningitis (chemical) and now have adhesive arachnoiditis, central pain syndrome, neuropathy and multiple chemical sensitivity.
http://www.satori-5.co.uk/word_artic..._with_mcs.html

In my case the chemicals passed the blood brain barrier. Doctors who treat this are few and far between but I do have one now who treats me at distance that's why I had these additional tests done. Thanks all will keep you updated, would be happy for any small amount of improvement whenever it might happen. Kindly, Alye

disease states that have low B12 in spinal cord fluid...

One is Fibro. Also Multiple Sclerosis, and Dementia.

I'm certainly no expert, but your levels seem very low to me.
Mine was 600 and I now believe this to be low.
My doctor gave me an injection of B12 in his office. That afternoon and the following morning, I had more energy than typical.
However, the following day and even the following week, I was tired again.
I began taking 1000 mcg of b12 tablets. At first it didn't do much. After a week, I started to feel better.
Perhaps it takes time to build up in the system or it dissapates, etc.
ARe you taking tablets between injections?
Can you take something for your stomach?
I take Axid daily.
It's over the counter now (I do have to ask my pharm. for it though).
I haven't had any side effects with this medication.

You might be surprised at the number of problems due to B12 deficiency. It is common for a time to pass before seeing any difference, and many learn months and years down the road (as things begin to change and then improve) that all the problems were B12 deficiency related.

Of course, that may not be the case with you, but it might be.

Best wishes,

rose

Read your post regarding B12 - my husband was misdiagnosed with a rare degenerative brain disease - I tried to tell him that it was a B12 deficiency as his level of 212 was noted as suspicious in his bloodwork but they never picked it up. 1-1/2 years later they now have changed their minds - it was the B12 deficiency that caused his dementia and brain damage. I did not wait though and have been giving him B12 injections myself for a year now, however, at the advice of the author of Could It Be B12? An Epidemic of Misdiagnosis (Sally Pacholok) -he is on another compounded form of B12 called methylcobalamin it goes directly to the neurons of the brain. Also, a loading dose of B12 is not once a week - my husband was getting daily injections and now he is receiving daily injections for 6 months of this new form of B12 after 1 year of therapy of the regular B12 cobalamin. You should get this book - on Amazon.com it is only $10 - Check it out!!
Linda

http://www.wrongdiagnosis.com/v/vita...ency/video.htm

The page at the link says that "pernicious anemia" is a "cause" of B12 deficiency and a "symptom." Wrong. It is not a symptom. The "anemia" that is sometimes a sign of B12 deficiency is megaloblastic anemia, not pernicious anemia.

Unfortunately, this sloppy thinking and writing about the B12 issue is common.

rose