Actually, I'm reposting from another forum, someone kindly gave me this link. Perhaps someone here can help me?

I am not sure I am in the right place, but I need some guidance and perhaps someone can help advise me. ???

In Jan 2007 my MD dx'd me with B12 deficiency after my visiting her for memory problems. I have had a whole host of troubles that don't seem to be able to have a cause. I don't know if the B12 deficiency could be the cause of them or not. I have had many lab tests - all prove negative. But here is a list of some of the symptoms as well as some of the actual diagnoses that I have had within the last 4 years or so. Have been receiving b12 injections since Jan 07, approximately every 3-6 weeks.

Of course, saw my doctor for memory loss. This included complaints of being mentally foggy - unable to process thoughts or information. I had also, after living in my present home and state for 17 years, started to give our old address in another state as well as the city/zip code, and even consistently wrote incorrect years on my checks (usually the 1970s). ??? I did not feel I had any neurological symptoms, but I am not a good patient for I ignore a lot of things that could be symptoms. For instance, I notice numb spots on my legs every now and then - or areas that feel cold (from the inside, for the skin is warm to touch). Just prior to the B12 diagnosis, I recall that there was one patch on the outer part of my left calf that was extremely numb and tingly for several weeks - the feeling would come and go. I never mentioned this to my MD though for it has only been recently I'm wondering about neuro sx from the B12 problem. I cannot walk down our stairs without holding on (ESPECIALLY in the dark!!!) and counting the stairs to make sure I get to the bottom as I can't seem to process that I am there at the bottom (sometimes even when going upstairs I count). I experience what I've felt was just plain sciatica down my left leg fairly often, which comes and goes. Figured maybe I just had a bad disc or something. I do have trouble every now and then feeling like my right leg is going to go out - I have a sharp shocky type feeling around my ankle and then my leg feels like it's going to give.

Was diagnosed with a fissure in the "you know what" earlier this year, also, that took 8months to get under control. Between the B12 deficiency and the fissure (caused by chronic diarrhea for several years, NOT hard stools) and lots of constant abdominal pain I thought maybe I had Crohn's Disease or IBS or IBD. However, recently had an abdominal/pelvic CT which showed NO problems, although did show a swollen lymph node in the portacava cavity, which my MD says not to worry about...? (Should I be worried about this?)

Two years ago I was diagnosed (by biopsy) with HSP Vasculitis. I experience joint pain and stiffness, particularly in my ankles and hips which can come and go and I can barely walk when it comes. I also have right shoulder pain which started about a year and a half ago which seems to come and go, but is pretty painful when it comes. I am so tired that sometimes I can sleep all day. Other days I feel like I have had enough sleep and can function during the day. Because my symptoms seem so diffuse my family has trouble believing I feel as lousy as I do - they think I am just being lazy for the most part. Another thing I've noticed is some hearing problems - I can hear but seem to hear what is being said differently than what it actually is (for instance...took a phone call at work the other night where the person asked "Were they dismissed" and I thought they said, "Did they just miss...?" I kept repeating it to them and they kept saying it over and over and I just couldn't get it, this happens A LOT.

Ok, here is my plea. What kind of specialist should I see and what tests should I ask for? Neuro? Gastro? Blood doc? I think my PCP has really done about all she can do - she's ordered every test under the sun (checked for RA, done ANA panels, and some type of IG-something or other, etc.). She doesn't seem too concerned about finding out what is causing the B12 deficiency though. I did ask for a referral to a gastroenterologist, and she thought that was a good place to start - except I work with one and he didn't think I needed to be seen bya gastro specialist. Should I ask for a lumbar puncture to have my CSF analyzed? I'm am in a quandry. Can ANYBODY help me? Maybe I'm just going crazy.

Thank you for your time.

Hi there. Welcome to our little family.

You are not going crazy, I can assure you. You just have lots of stuff going on in different places in your body. A lumbar puncture would really be helpful because it can detect any auto immune stuff going on. I take it you have not seen a neurologist yet?? That should really be your best next step. But others more knowledgable than I am will jump on board and tell you where you should go next and what kind of tests to ask for. There are lots of friendly folks here and someone will help you.

But if you could give more info, that would be great. It would help them to help you.

How old are you? Do you have diabetes?? Have you had your thyroid checked? Have you had any MRI's of anyplace on your body??
What exactly is your B-12 number??

And your family background. Anything unusual going on with your parents.??

See, lots of questions. I might as well ask them, because someone else will.

Then when you post the answers, I bet someone will come right along and give you great next steps to go and take.

Take care,

Melody

Welcome.

The problems that can result from B12 deficiency are way too many to list.

If I were you, I would learn a lot about lyme and celiac (and gluten intolerance). Sounds like you are a good prospect for B12 malabsorption plus at least one of the others. You must learn a lot about all three if you want to pursue proper diagnoses or ruling out of those. Most doctors don't have a clue.

rose