B-12 Deficiency

Hi Barry. Earlier,this year my neuro referred me to an oncologist/hemotologist to rule out any malignancies. My B-12 level was quite normal but he still wanted me to take extra B-12, the strongest I could find. I’ve been taking 2000 mcg tablets since January in addition to a multi-vitamin/mineral tablet. There has been no improvement in my symptoms, on the contrary, they have been getting worse. But don’t forget we all are not the same. What helps in one case may not in another.

I am not sure if a neuropathy caused by B-12 deficiency is the same as CIDP. I don’t see how a lack of B-12 can cause an [u]autoimmune[/u] disease but then I am not an expert.

At my very first visit at a neurologist’s, he found that I suffered from poly neuropathy, and told me that the three most common causes for this condition were long term alcoholism, diabetes and B-12 deficiency. The two first reasons we could rule out there and then, but since he had to test me for B-12, he ordered me to take five shots of B-12 just to be on the safe side before the test results came through. The shots made no difference, as my B-12 level was absolutely normal.

When I later was dx’ed CIDP, and then later still PDN, there has been no talk of any supplementary B-12, because CIDP has nothing to do with B-12 deficiency.

Of course if your B-12 level has been extremely low over a long period of time, while you are suffering from CIDP at the same time, the deficiency probably will make your symptoms worse. But in the end CIDP and B-12 deficiency are two different conditions altogether.

[URL=”http://brain.hastypastry.net/forums/showthread.php?t=57840″%5DHere [/URL] is some really good information on B12 and neuropathy…

GreenWing

[QUOTE=Comfortably numb]Hello friends….. Happy fathers day to all the dads out there.

My neuro just called with the results of my latest bloodwork. She explained that my B-12 level was low…300…
My understanding is the normal range is 200–1100.
She thinks that this can certainly contribute to the symptoms I have with a chronic neuropathy ( CIDP ).

I will see my primary care Dr. this week to explore treatment to boost my
B-12 levels. I take a multi-vitamin, but apparently this is not enough.
Has anyone here experienced a reduced B-12 level ?
What symptoms did you have, and how was the vitamin level boosted.
Did the low B-12 make the symptoms of GBS/CIDP worse ?

As always, thanks for any advice offered. Barry[/QUOTE]
Barry
I take 5000 mg B12 several times a day I have ALS with Severe Bulbar palsy
I get it at the health food store The tablet taste fruity and melts under your tongue .. without it I can barely get out of bed . I was looking for Ivig treatments ….. they might hopefully help me

I take B-12 by injections (1000mg). My treatment routine is 2-PE every 5-6 weeks (usually on the 5th and 6th Fridays) and I usually have the B-12 injection during the 3rd week after my last PE.

I’ve had low B-12 levels ever since they began doing the analysis during diagnosis.

Gary

I have long-lasting GBS residuals and give myself a B12 shot once a month. I definitely can tell the difference. But I am extremely reactive to anything so it’s not a big surprise that it helps 🙂

My B12 level was 291. I believe it’s within normal range. But should I take B-12 supplements to make it higher? Will it help w/ my neuropathy symptoms? Some numbness in my fingers, pain in my legs.

Recently diagnosed with CIDP and was admitted to Swedish Cherry Hill in Seattle, first a medical floor and treated with IV Steroids for 5 days which seemed to shock the immune system.  I was lucky enough to be admitted to their Intensive Rehab Unit 2/6/13 where I was switched to oral predisone (60mg) for a period of 3 weeks then 40 mg for 3 weeks, then was dropped to 20 mg.  All the while my improvements were exceptional from barely able to even sit up to totally mobile and independent in a walker and wheelchair.  I was even scheduled to go home and I crashed/relapsed not be able to stand to a walker.  They hooked me up to IVIG for 5 days of tranfusions which seemed to have limited positive effect.  At that point they followed up with the IV steroids for 3 days which almost immediately seemed to help, then back on oral at 60 mg predisone for 4 weeks and just last week down to 50mg.  The rehab almost had to start all over again but the progress back to independently mobile again was pleasently surprising, I’m home as of yesterday.

The point of my posting in this thread is that in a conversation with a new Neuro Doc I mentioned that I was a 15 colon cancer survivor, Lower 6 inches of my small and the first 8 inches of my large intestines were removed.  That is where most B complex vitamins are absorbed, especially B-12, a nerved nuritrement.  She quickly put me on what she termed “Loading Doses” of B-12.  And told me that I will get B-12 shots once a month for life.

My present CIDP treatment/maintenance plan now is maintaining the 50mg Predisone, and starting a ramping up doseage of Immuran until I am at a 200 mg level (month & a half).  Then start ramping the Predisone down slowly in increments of 10 possibly 5mg’s over a longer period of time.  Wish me luck.