Possible B12 Deficiency?

[doreen]

Thanks Doc for answering my question below about "Dr. says not MS" (dated 10/27).  I received several emails from people that have the same symptoms as me.  What are your thoughts on it being B12 deficiency?  I've had tingling on/off for ~12 years, weak feeling on/off in arms and legs for 2 years. Ting is now gone in my legs, but now my left leg feels like I'm picking it up (looks normal when I walk) - it just feels wierd (worse at times than others).  As I've said I've had 4 MRIs of Brain, 2 of spine, Evoked Potentials - all normal (MRI just done 1 year ago on brain - normal and EP - normal).  My neurological exams are normal, but I don't feel "normal".

Any other thoughts on what could be going on?  

- B12 deficiciency?
- Could this be a viral thing in my body?
- Lupus?
- Something else you'd look for

You mentioned in your previous email that I don't need any additional testing, but I'm not convinced this is an anxiety thing - and if it was - how do you know for sure?

Thanks for your time.

[CCF Neuro[P] MD, RPS]

Dear Doreen:

If you had vitamin B12 deficiency you would have a low normal to low level of B12.  A simple blood test would check this out.  If it is really longterm and chronic, then you might have an anemia.  A post viral illness is usually made by clinical manifestations, such as tiredness, muscle aches and pains, joint pain, etc.  Lupus would give an elevated sedimentation rate and C-reactive protein, low complement factors in the blood, mucousal changes, alittle loss of hair, joint pains, rash etc.  Most of what you asked would likely have been found on routine laboratory testing which is probably already been done.  If anxiety is the etiology, then times when your not anxious (prolonged periods) you should get better.  This would also occur when you took medications for anxiety.  

I hope that I answered some of your questions.  I wish there was an easy answer.  

Sincerely,

CCF Neruo MD

[A cry for help for a norwegian doctor]

I am a medical doctor in Norway who live in a nightmare of pain
and suffer of extreme rare syndromes , nevertheless well described in Medline articels.
I will probably die of this stuff and have nothing to loose.
Any doctor or lay person ho read this and mean or think anything
about it is very welcome to mail me some word at

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EVERYTHING opininon and suggetsion are OF GREAT VALUE FOR ME!
I will try my best to give you respons.
Anybody who read this are very welcome to say their opinion,
give me advise, give E-mail adresses to people that might know something, give me link, and you are welcome to send this story
to anybody you want.

Norwegian colleques know little about this and have no experience of this syndromes and can therefore offer me little help, but they have given me a wery good examination, se below.
1.
Can you have a B12 induced neuropatic symptoms with a
low og mid normal serum b12 level?

I think yes in several situasjons?

If B12 have been low for a period for some reason e.g.
subcronic bowel infalmmation for some reason,
inntake of folic acid is now higly suspected to not only mask
megaloblastic anemia , but also empty the liver supply of B12.
I this cases you will feel week.
I presume it is quite common to take over the counter
B vitamins also containg b12 when you feel weak. And then you increase your serum B12 count into the normal range ,but mayby not enogh to heal the damage of the nerves og maybye this low level b12 supply cannot stop further development in the B 12 neuropaty.(You should be over 500 in serum values ;normal above 150,to treat a B12 neuropaty, and some say you can develop B12 def. neuropaty if you are under 250.)

I experience and have personal experience of this low level
B12 additives to little or to short or both CAN GIVE YOU A
B12 DEFICENCY NEUROPATY DESPITE A B12 VALUE FROM 150 -250 or even higher?  This is especially the case when b12 is given as injections because most of this B12 ,cyancobalamin, goes unmethylated 70% out in the urine througt the serum where it gives false high serum values compared to the intracelluar level. Homocystein and metylmalonacid is maybe falsly depressed compared to the B12 satus if the person take folic acid supplement/additives and this does everyone that eat flour in the USA and Canada.

  WHAT TO THE EXPERTS THINK?  All this questions have to be answerd before you can say that a neuropaty person with
B12 serum values under lets say 250 will ,not benifit from
B12 supplement , I think it still can be the B12 that is the problem. WHAT DOES THE EXPERT THINK?

2.
NOW , MAY PERSONAL STORY from a severly ill mediacal doctor.

SHOULD A PATIENT WITH SENSORY PAINFUL SKIN NEUROPATIA WITH
EFFECT OF NEUROTIN, AN INITIAL b12 DEFICENCY IN 1999(B12 140, MCV sligthly elevated, nevropaty, mild bilrubinemi 30,and a terrible fatigue)This was probably caused by taking 0,8- 1 mg folic acid for 2 years combined with other vitamins , but only 2 mikrogram B12 and this probably emptied my B12 reserves. (The reason I started folic acid among other vitamin was that FDA found reason to do the same on hole populations (1,4mg/kg flour)
cerals with 0,4mg/serving. Clinical use of folic acid varied from 1 -4 mg /d (homocystemia in Europe, pregnant after one neuraltube defect)without combination with b12 and I thought 0,8 -1 mg could do no harm. Arteriosceloris studies use 0,8-5mg folic acid , but in combination with B12 0,4-1mg)
When i geat weak I started B12 1 mg orally and get rid of the fatigue rapidly, B12 raised into normal range 240, MVC normalised and neutrophils raisd to subnormal values 3,8.
BUT I then developed 1,5 years ago (aug 99) SOME SYNDROMS (syndromes) that usually are peraneoplastic(palmar facittis with artrittis(higly acossieade with cancer) I THEN STOPPED ALL VITAMINS INCLUDING B12)hematophagocytosis in bone marrow(reactive og malignant caused),vision distubancies with retina autoanbody found p35K; (50%with p35K have cancer)Normal Hb,WSR,and all other lab. BUT NO CANCER FOUND DESPITE OF 1,5 YEARS OF INTENSE INVESTIGATION TH(MR scans all over several times, BONE MARROW FRESH INVESTIGATION X 7 with PCR and flowcyt SHOWED: HEMATOGONES , blast that are can be reactive or malignant, but since they are polyclonal they assumed to be  a result of a higly reactive boone marrow, PET scan hole body and MR boone marrow normal,CT brain,thorax, MR abodmen)

All my symtoms are INCREASING Month by month for 1,5 year.
I have now lived in a pain nightmare for 1,5 , out of work , sleep 15 hours a day, pain in all the skin which increase  simultaneous with sight , tinnitus , night sweats during the day with a maximum after midnight,

Now I wonder: A hidden cancer can explaine all the symptoms,
but I wounder if I stopped the oral B12 to early when I got the paraneoplasias. Mayby could B12 improve the nerve function
regardless the cause of the sympoms are autoantibodies to nerves
(not found on test)caused by cancer or the cause is a B12 defiecency witch was not fully compensated.   HCY and MMA is now normal, but the standard treatment for B12 def. nevropaty have been to overflow the system with i.m cyancobalamin with serum values over 500 or
maybe add folic acid 1-2 mg i addition.

Is this wise to do when I still can have a hidden cancer?
If a B12 inj. could boost a hidden cancer. I am in the paradoxal situation that it will maybe improve my prognosis for the
damages of the nerves if the cancer are detected earlier, which a B12 boost can contribut to, but it could decrease the prognosis of the cancer survival rate and time according to some articels measuring the B12 levels on cancer patients.
Is it wise to give B12 to a person that migth have a hidden cancer??? Probably not, because it can increase the cancer growth
if B12 is the substance in shortage for the cancer.

FORGIVE ME THE COMPLEXITY OF MY STORY, but it hope it will trigger some enthusiasm and interesst for a doctor devoted to  the art of diagnosis.
My story indicates several things: We know that folate in high doses can stimulate the growt of an alredy established folate dependent malignancies, but this is not known in doses under 1 mg/d according to FDA.
Metaarticles in Medline (1996) conclude:Folate supplement between 1-5 mg are most unlikely to have any severe side effects, even the masking of magaloblast anemi is poorly proven.
BUT CAN FOLATE START CANCER? MAYBYE YES ,IF THE B12 LEVEL IS LOW?

I had B12 140 and took 1 mg folic acid a day and had HCY and MMA in the normal range. (There are now adwise on the over encounter box of thaking b12 simoustainlesly,
we don`t do it to pregnant and the FDA don`t do it in the flour additives.
I was probaly in the metylene trap which means as far as I know
that because of lac of B12 folic acid cant be methylies and therefor not used bay the cells for DNA cyntesis. This couldt as
I think about it lead to DNA replication problems in esp. in rapid growing cells like my boone marrow. Give malignant cells
there , wich in turn give me my paraneoplastisk syndroms (syndromes).

THIS MEANS THAT PROLONGED USE OF FOLIC ACID WITH SHORTAGE OF
B12 CAN NOT ONLY ACCELERATE AT CANCER BUT MAYBE CREATE IT?

IS B12 BAD FOR PRECANCER AND CANCER. There is human and rat studies that implicate this.

3
DO YOU HAVE ANY EXPERIENCES OF A POP UP OF A CANCER AFTER STARING  FOLAT OG B12 SUPPLEMENT?

I plan to start B12 oraly 1 mg/d to try to stop the progression
of my sensory painfull nevropaty inspite it is probably caused by autoantiboides because I have autoantiboides to my retina.
I don`care if may presumably hidden cancer popps up as a result of this because then I maybe can get causative treatment.

I AM VERY THANFULL FOR ANY COMMENTS.


MAIL TIL

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