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

[Violet1717]

Hi Linda, thanks for your comment. I'm sorry that your B12 deficiency went undiagnosed for so long--and that you may have gone through the trauma of a mistaken MS diagnosis to boot! My understanding is that B12 def can cause lesions, particularly on the spinal cord but eventually on the brain as well if untreated too long. Perhaps your lesions came from the vitamin deficiency.

Also speaking from my research, I would URGE you not to settle for levels in the 200s. With symptoms like yours, why settle for a cure with a 10% chance of failing? I wish you the best of luck.

[lchelsemom]

Wow!  I had pretty much same situation!  I was diagnosed with MS when I was in my mid-30's.  I had numbness/tingling in one arm and opposite leg.  2 Spinal taps normal.. 2 areas of plaque on brain.  Extreme fatique!  I would drop things, feel like my feet were dragging etc.  I went to 4 or 5 neurologists who said they thought it was MS.  Went to MS specialist at U of Miami who said he thought it was probably MS.

About 10 years ago, I went to a new gastro. Dr.  I told him about MS dx.  He did B12 test and I was <100 - virtually none in my system. He told me that over a proglonged period of time, lack of B12 would take on MS symptoms and could be very disabling after a long period of time (wheelchair, etc).  I started injections monthly and recently had to increase to every 2-3 weeks because levels are low.  

Unfortunately I moved away from that Dr. and my Dr. now feels that low 200s are fine even though the other Dr. said I should keep between 400-500. A number of yearsa ago, my levels were 1000.  No one so far has been able to explain to my satisfaction why I am dropping B12 levels so low in 3 week period.

I am very interested in knowing what the Dr. says in his response.  Most Dr.s now feel that I don't have MS because there have been no new lesions in over 10 years and no additional symptoms of MS.  Unfortunately, they recentlly diagnosed fibromyalgia and with fatigue, memory loss, etc. I have had to go on disability.  From my encounters with doctors, the line is often "fuzzy" between the 2 unless you have other, definitive MS positive testing (which I didn't).

Good luck!

[daisy23]

You definitely should continue taking B12 injections, as the others stated, having low levels for a prolonged time can cause permant neurological damage.  I, myself, began B12 injections about 1.5 years ago.  My doctor informed me that I would need to continue with the B12 injections for the rest of my life, as once diagnosed with this deficiency, one rarely can go without these injections.  Settling for B12 OTC vitamins aren't as effective as injections, especially if your deficiency results from an inability to absorb B12 into your blood stream.  Continue looking for a doctor that will listen and give you what you need.  Good luck!