please help!

[dana023]

I was finally diagnosed with B-12 defficiency after 10 years of pain on the entire left side of my body, im not sure i completely believe that is the problem, however since i got my b-12 injection it has happened maybe 4 days in a month instead of 30. Can someone please help me I have been to many neurologists, pcp's rheumatologist, chriopractors and PT's. I have pain on the entire left side of my body from my forhead to my toe, it feels like someone drew a line down the middle of my body and injected my left side of my body with air (painfull air). I also have pain in my back from the middle to the top. I thought all was well after I got my b-12 injection and now im taking supplements however, since about a week after the injection i have an off-balance feeling when i walk and a tingling in my head.(constant) this went away for about a week but just came back...total of 2 months now. I went to the ear nose and throat Dr who said ears are fine, had a echo of heart which was fine....can anyone put any of these symptoms together for me and tell me if the off-balance is a result of the B-12 or just another symptom in my saga?

[enzymelover]

  The most common reason for a  B12 deficiency is malabsorption, from either a diagnosed or unknown intestinal disorder.
If you can find a doctor or a nutritionist who will use the Metametrix Lab Gastrointestinal Function Profile test, you may be able to pinpoint the cause of your B12 deficiency.  This test covers a wide variety of bacteria, pathogens, parasites, mycology, drug-resistant genes, immunology, pH, and of course digestion and absorption markers. All from one little stool sample.
Metametrix has a website, or you can phone them  at 800-221-4640, or  770-446-5483.
My nutritionist ordered this test for both of my kids. It confirmed my daughter's intestinal yeast overgrowth, my son's protein maldigestion, and several other abnormalities.

Enzy

[Cindee56]

Have you ever had an MRI on your back?  You could have a spine problem, like spinal stenosis from bulging or herniated discs or arthritis.  I have cervical spine herniated discs and a bulging disc in my back, and I get a lot of the symptoms you described with the shaking, back pain, stiffness, ear pains also.  My pain is mostly on the right side, since that's where most of the bad discs are.

The other possibility is maybe you have fibromyalgia.  The symptoms of fibro can be very varied.

[Woof1957]

When I spoke of med center I'm talking about the major medical centers like Mayo, Cleveland, John Hopkins or any good University Med Center.   My b12 test came back at 159 and I do not have CFS.  

I really think a major center is my next step in moving forward.

LOL and good wishes in your quest.  
K:)

[dana023]

my off-balance problem didnt start until after i got my injection of b12 and started taking the pills....all the doctors say its impossible for B12 to do that to you but i have never been off balance a day in my life....

[PlateletGal]

That makes sense because CFS experts are recommending B12 injections and/or drops if your level is low normal. In addition to that, CFS patients were found to have low B12 levels in their brains.

I think this is one of the reasons why many Naturopathic physicians give B12 injections to their patients.

[dana023]

my level was 239...normal is 200-1000 thats why i went so long without being diagnosed....drs saw "NORMAL" and bypassed it....BUT they say that normal is really somewhere above 600. you can have symproms from 500 down..

[jason80]

I'm curious how low does one's B12 have to be to be considered deficient. Were the levels borderline are much lower than normal range -- to be dx-ed deficient.
Thanks.

[dana023]

Thanks Kim....I too have been tested for MS, Lupus, Fibro, Lyme...everything, no answers...MY ANA is positive at 1:80 speckled AND high sedimentation rate....they just say oh sometimes thats normal.....well given all of the other symptoms i have you think they would come up with something!!!! What do u mean by a med center? I dont know what that is?

[Woof1957]

Hello,
I've posted on the MS and Neurology forum since I have a host of symtoms that relate.  Recently, I too was dx with b12 def. Severe fatigue and slight flu like feeling for 6 years.  Docs chalked it up to post menopause or stress.  I think all women hear this sort of thing at my age.  

Am an optimistic soul so continued on with life as usual until 2 years ago when very unusual things started cropping up.  All tests normal except high crp (inflammation).  At that time things were so bad thought I was headed for a wheel chair.  Neuralgia, body vibrations, arms/hands short-term paralysis, nerve and shock like pain.... vision problems, novacain feeling face, vision problems.... periodic off-balance, clumsy with hands, numb feet and difficult to walk upon waking.... ringing in ears, severe sharp ear pain, the list goes on and on... on.  

Pain from moderate to severe migrates thru body.  Have a high pain tolerance and never  one to take pain meds for anything really.  No diagnosis a year ago did need something so prescribed low dose Lyrica. Helps nerve pain somewhat.  I'm 51 and look fairly well and my PC doc seemed to brush me off... reckon because he couldn't pinpoint anything from the tests.  Felt like I was wasting his time.  Neuro, Ophla-Neuro, Cardio, Vascular couldn't find anything.  Tested for everthing under the sun... MS, Myasthenia, Lyme, RA, Lupus, Thyroid, Lymphoma, Hodgkins... yadda....yadda.  

Rheum ran labs and found low b12 (March09) and now crp is normal.  Took b12 self injections once/week. Now once/month. It was a revelation to have some sort of validation.  Fatigue is much better... but other symptoms still rear their ugly heads.  Rheum is guessing I have Lupus or MS?   I'm not much on guesses when it comes to my health.  Been healthy as a horse, cast iron gut and eat well so low b12 is certainly a mystery for the docs.

Considering going to med center where a triage of docs might be able to collaborate and get to the bottom of why low b12 and to see if some type of overlap condition could be causing this malabsortion. You may want to go to a center also.

I'm wishing you very well and do so feel your pain.  Hope your docs can help you soon.

Have a nice Friday!  
Kim:)