B12 deficiency problems

[itsallinmyhead1969]

Hello everyone. I got to go see the neurologist yesterday. Thank God I seem to have gotten a good one. I was afraid that he would go with the other doctors and say that my problems were in my head, but he asked me what my symptoms were and listened to everything I had to say.  He wanted to know how long it had been going on and then did his examination.  Then he said that he was concerned that my ANA was so high and he was going to do aot of tests to rule alot of things out, but he thought I may have MS.  He said that I was severely B12 deficient.  He said that I should be taking shots but that my pcp would have to prescribe those for me and he would be sending him a note to that effect.  He did prescribe tablets for me to pick up yesterday though.  He also put in the note that he wanted the pcp to find out the problem that was causing the deficiency. (I didn't reveal that I knew it was a symptom of MS) He told me that he would get to the bottom of my problems and I just cried.  After all of these years of suffering and mistreatment from the doctors, I just couldn't believe my ears.  I think he was surprised at the reaction.  He kept telling me that I was going to be ok.  He was going to find out what was wrong.  Today, the jerk pcp's nurse called and smartly told me that the B12 deficiency was due to my irritable bowel syndrome. (which they also ignore) and they would be sending me a letter when I could come in to take monthly shots. Is that all that is required? Monthly shots? The neuro acted like it was a much bigger deal. He really acted like he wasn't very happy with the pcp.  I know I'm not.  I thought maybe some of you who have to deal with this problem could tell me what you have to do. Thanks......So happy to have found someone who will try to find the answer....whatever it is.

[Quixotic1]

A BIG thanks for jumping in here with that info.  That's why I love all you guys!  There is so much knowledge and experience here!

Q

[Super_sally888]

Hey,

Congrats on finding a good doctor.

Ok, my first thought when you mentioned ignored IBS and B12 deficiency is celiac disease.  This is one of the conditions that commonly occurs in people with autoimmune conditions.

IBS is a rubbish diagnosis.  Stands for "I'm Bl**dy Stupid" and can't be bothered finding out what's really going on, referring to the doctor.  I went for 8 years with severe IBS, which I'm sure you know has social and self-esteem consequences, and only when I went gluten free did I realise it was all preventable!

Have you been tested for celiac?  Severe celiac can also cause neurological symptoms.  Vit B12 deficiency can also cause brain changes that may have some similarities to those seen in MS.

Celiac is caused by sensitivity / intolerance to gluten, which is found in anything that contains wheat, barley and rye.  oats are also excluded becayse they are usually cross-contaminated with gluten.  The gluten free diet requires some adjustment.  It excludes everything that contains wheat, barley, rye or oats and everything made with them.  Things that are not allowed also include things like soya sauce, beer, most processed foods.  From what you've said, and even if test results come back normal (there is a high rate of false negative in testing for celiac) you should give a gluten free diet a good trial.

Best wishes

Sally

[Quixotic1]

I do not believe that the military does not have to keep records.  Many studies I have seen use medical records going back decades - several decades.  I suspect the person was either misinformed or lying to get you out of his/her way.  Also, the records may only be kept "on site" for a year, but the older ones may be kept in storage.  I would ignore what you were told and put in another request for all (read that ALL) of your records.  If you are stone-walled again, take it to the superiors of whomever is feeding you that line.

Do not apologize for getting bad info (about the B12).  There is a lot of bad information out there and you almost need a medical degree to navigate it all.  That's one of the reasons I'm here.  

A 1.5T MRI is the norm in this country.  the 3T's are scarce.  For most people the 1.5T are sufficient.  I never mean to imply that the data isn't any good.  It's just if someone isn't getting answers then pressing to find a 3T machine would be a good next step.  The exception is that for the spinal cord the 3T is clearly superior.

Good luck.

Quix

[itsallinmyhead1969]

The neuro ordered an mri with ms protocol for me. Unfortunately the machine the va uses is only a 1.5T.  He also ordered a light activated test of some sort that they will have to do outside the VA.  I think I have seen it done on the television show "House". As for the B12 deficiency and MS,  I read somewhere that when the body tries to repair the scarring of the mylon sheath it pulls the B12 from itself in order to fix it and that was what caused the defeciency.  My apologies if I misunderstood what I read.  I don't know any of my levels.  I have requested my records...if you remember...I pm'd you about the military records problems.. I am waiting to get the recent ones.  I still don't know if I have any any further back than last year.  They said they don't keep them any further back than 1 year. I couldn't believe it. I really need all of them.

[Quixotic1]

Actually B12 deficiency is not related to MS.  It is a mimic of MS and should be ruled out before concluding that a problem is related to MS.  So please don't think that your low B12 level is a sign you have MS.  I think I remember you saying this before, but I did get to telling you that the info you got was wrong.

If your PCP ignored a severe b12 deficiency it IS a big deal.  If you are severely deficient (do you know the B12 level?)  then it is likely you cannot absorb B12 from the diet and will indeed need monthly injections.

Once you have a normal B12 level for a while they can see what problems still remain and begin to deal with those.  Would you refresh our memory about your MRI results?

You clearly need a new primary doctor.  No one should have their symptoms ignored, nor should they have IBS or any other disorder ignored, nor should they have a smart-*ss office assistant.

Congratulations on finding a caring and dedicated Neurologist!  They do exist.  They are not rare, but they are, indeed, a treasure.  With the high ANA (how high?) they have a lot of looking to do at the inflammatory diseases.

From here on out you should be getting some results.  That is wonderful!  But, make sure you find a different doc to handle things.

Quix