B12 deficiency

[lchelsemom]

I have a very complicated medical history  that includes a diagnosis of MS, B12 deficiency (intrinsic factor), fibromyalgia, chronic pain and fatigue, narcolepsy.  I am very allergic.

The MS is questionable.  It was diagnosed about 20 years ago - 2 negative spinal taps, no progression of symptoms - based pretty much on symptons at the time and 2 areas of plaque on brain.

About 15 years ago, a very conscientious doctor(gastroenterologist) found that my B12 level was <100 possibly causing the neurological symptoms I was experiencing.  I started on monthly  injections and my B12 stayed at a high/normal level (about 1000) for many years.

Recently my B12 level plummeted to <200 although I am receiving monthly injections.  Injections were increased to every 2 weeks and level has gone up to about 300.

I am concerned about this loss since the Dr. who found the defiencey told me it took about 7-8 years to deplete supply of B12.  I question why my level has gotten so low since it has been about that same period of time for this decrease.  The Dr. has since retired.

I am presently being seen by a primary care, gastro., endoc., nueroligist (as needed), rheumat. pulm. for narcolepsy.  I don't know what speciality is left to addeess this B12 issue.  None of hte above have been intested in pursuing the B12 condition.  

I am presently on disability due to pain and fatique and I am trying to "fix" those things that might be fixable so I will feel better.

Your thoughts and what speciality Dr. would address this B12? Actually I would like to know where I could go to be assessed  by a group of Drs. working together.

Thanks-

[Kevin Pho, MD]

Typically an endocrinologist will address the B-12 issue.  If the cause is of a GI etiology, then a gastroenterologist would be helpful.  

Various tests can be considered to look for the cause of this.  This can include various tests for intrinsic factor - which I'm sure has been done (i.e. looking for intrinsic factor antibodies).  

Other things that can cause a lack of intrinsic factor would be various gastric malignancies - including stomach cancer.  This possibility can be evaluated via an endoscopy which can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[MLWTR]

Have you been checked for celiac disease? That can cause B-12 deficiency because it affects absorption of nutrients.

[lchelsemom]

Yes, I have. I don't think there is any test I haven't had done.  I think one of my "newer" Dr.'s thought it might be that or sprue but both you r negative.  Thanks for your thoughts!

[kenzerboo]

hi. i was floored when i saw this. i have been recently diagnosed with b-12 deficiency after suffering serious speels of weakness and neurological issues,muscle spasms,  brain fog and EXTREME ITCHING like bugs crawling on my skin.
i was diagnosed with fibromyalgia since i was 21 (now 33), narcoleptic at 28 after a sleep study (have you tried provigil..it is a wonder drug for the fatigue...it is for narcoleptics and i have NO side effects).
i have done physical therapy with little results. can't excercise without extreme pain the following week, take meds for depression and anxiety...
there were just some similiar things here, especially the narcolpsy, fibro and b-12. we sound like we have something similiar going on . we should compare notes.
have you ever had any intestinal things go on? like c-dificil (i had from antibiotic when i was 22 or 23) . do yo uhave chronic yeast infections or anything similiar , have you ever been put on nystatin? maybe you'll get this maybe you won't but i would be curious to hear if anyone has heard anthing about these symptoms going to gether.

[momgirls5]

i have had fibromyaliga for 15 or so years,pain that is sometimes so bad, i cant do anything, nuerological problems(they dont know what) doctors have basically thrown up their arms and said i dont know what to do. I have very bad pain in my legs and burning and pain in my feet.  they have put me on zoloft which has caused nothing but problems,i am on lortabs, methadone all for pain, mirapex also for pain or RLS, nothing really seems to work well, and i was reading some of the comments made here about b12 defieciney and it looks like getting shots or something like that might be benifical.
i cant sleep at night and if i do its only for a few minutes at a time, so i might get 1 or 2 hours a night if im lucky.  i havent had a sleep study, but i have found myself falling asleep instantly, dont know if thats caused from lack of sleep or not, but im not sure what to do next.  any ideas from anyone might be helpful.
thanks

[missatonia]

A related discussion, Narcolepsy B12 was started.