paresthesia--vitamin B12 deficiency or MS?

[Violet1717]

I was dxed at age 32 in October 2004 with adult-onset type 1 diabetes. Just days later, I began to feel a sensation like being stuck with a pin in fingers and toes. Location moved around at random & spread in days to include legs, arms, sides, face, mouth, scalp. Occurred most often in feet & hands. Problem was not constant & for many hours of the day I was pain-free. Endoc said I hadn

[professionalfemale]

Hi there and thank you for the information. May I ask how low you was when you was diagnosed? did you ever get muscle spasms all over body or am i just one of the special ones..(sad). How was your b6? I would like to talk more if you have time. My messenger is ***@**** please add.

[Violet1717]

Among the things I've read about B12 is that when you start injections you sometimes feel WORSE before you get better. This is because the brain has to readjust to the presence of B12, and wacky symptoms result. Then improvement, hopefully, begins.

I would add that my course of injections is more frequent than yours. I'm getting 1 per day for 4 days, then 1 per week for 4 weeks, then 1 per month ongoing. I wonder if you're getting enough B12?

Finally...for everyone...there is an AMAZING forum on all things neurological where I've learned a lot the last couple days. A long & VERY useful post on B12 is found here: http://brain.hastypastry.net/forums/showthread.php?t=57840

There are boards at the same site for pretty much every neuro issue you can think of, and then some. Go read and good luck to all of us.

[professionalfemale]

Hello I found out about a month ago i was vitamin b12 def. My level was at 194. I was just wondering from someone if this is a low level. Also how long does it take for the injections to start working. Today was my 4th one in a month. I really dont feel any better. Also the muscle spasms i am having seem to be getting worse. I have the spasms all over my body. (which is annoying). Is this common for low b12 my doctor doesnt seem to give me answers when i ask him. My sypmtoms are alot like those who posted. Weak, fatigue, headaches, dizziness, flu-like symptoms. I had an mri, of head and spine didnt seem to think i have ms but Lord i just feel like i am getting worse. I hope to hear from someone soon.
thank you

[professionalfemale]

Hello, thank your for the reply. I def am having neurological symptoms especially the spasms all over. But i wasnt for sure how low was low. I never seen the whole lab report from doctor just the number really quick when they showed me. I start once a month next month but i hope that isnt too long for my next one. Do you know if you are low in b12 you can be low in b6 as well. I asked them if they could get me a blood test for that as well. Waiting on the response. Do you have any idea why we get so low? I had no idea i had a def but couldnt understand why i get so weak in my limbs..it was scaring me. Thank you for all your support.
love, steph

[lchelsemom]

Thanks everyone for your comments!  I feel somewhat validated since most don't understand the effects these things have on your day to day life!  Thankfully the Dr. that found B12 did extensive biopies, etc. and I do have a malabsorption problem (lack of intrisic) so orally won't do much for me.  

I really beleive my levels need to be higher.  My Dr. does not.  I will be retested in a couple of weeks and will see what the levels are.  I definetly believe in what the first Dr. told me about staying in 400-500 range.  My present Dr. says no need.  Since B12 isn't toxic and I feel so crummy, I don't really understand his resistance.  Since I don't know WHY it is dropping and he doesn't know either, I don't really know what todo next.  I have been to every specialist.  I am considering Mayo clinic to get checked head to toe-

Any other thoughts and ideas are appreciated.  Fatique is debilitating no matter what the cause and it is not really understood by others (go to bed earlier, etc).

Linda

[aussie99]

Hi Ladies,

According to what I have recently learned, low B12 can be very dangerous. Normal levels may be found in blood, but not in tissue. It needs to be carried from the blood to the tissue. Sometimes it cannot make it's way to the tissue because of lack of intrinsic factor in gut. Intrinsic factor is the vehicle that transports it to tissues. This is also a case of malabsorbtion. I also have alot of the same symptoms, and take 2000 mcg's of B12 just in case this is my problem. I have had gastro problems in the past, mainly ulcers and have body wide burning & prickiling? No real diagnosis yet. I have learned that people with symptoms like ours, should take a multi B complex, and at least 1000 mmcg's of B12 methylcobalamin form, while we are seeking a diagnosis.