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RMS01 12-01-2012 06:35 PM

Seeking pernicious anemia specialist in LA
 
I'm currently very dissatisfied with my doc's diagnosis.

The symptoms include headache, optic neuritis, Uhthoff's, brain fog, fatigue. The current diagnosis of migraine might be stretched to cover those, but it does not explain the paresthesia of the left foot, nor the occasional full-body tremors that last for an hour or two. Nor does it explain the CBC findings of high RDW, low MCHC, and low MCH.

The neurologist to whom I was referred did not even know what Uhthoff's sign was. Nor did he believe that it might be significant that I had used lots of antacids for weeks prior to onset of symptoms. So I'm feeling like I'm in some Kafkaesque tale of torture by incompetent doctors.

I'm looking for a doc in the LA area - or anyplace in Southern California - who specializes in pernicious anemia, and who might take me seriously when I say that I've got a better diagnosis than my doc. Heck, even Northern California would do.

Thanks
RMS

mrsD 12-01-2012 06:50 PM

Welcome to NeuroTalk....

Did you have a B12 test? Was it below 400pg/ml?

Do you have elevated MCV? Elevated MMA and/or homocysteine?

These are the major tests for low B12. You can treat yourself OTC you know... 5mg of methylcobalamin oral daily on an empty stomach is as effective as injections of synthetic inactive cyanocobalamin.

There is a test for antibodies to the parietal cells of the stomach that make intrinsic factor. Perhaps a hematologist would be best for you.

RMS01 12-03-2012 06:33 PM

Quote:

Originally Posted by mrsD (Post 936187)
Welcome to NeuroTalk....

Thanks.
Quote:

Originally Posted by mrsD (Post 936187)
Did you have a B12 test?...MMA...homocysteine...
Perhaps a hematologist would be best for you.

MCV is 84.

All of the other tests, I have not had done.
I haven't seen a hemotologist.
All of these require convincing your primary care doc that they are necessary - which does not happen when the doc believes that it is a migraine.:mad:

Quote:

Originally Posted by mrsD (Post 936187)
... You can treat yourself OTC you know... 5mg of methylcobalamin oral daily on an empty stomach is as effective as injections of synthetic inactive cyanocobalamin...

Thanks. I'm taking about 1gm of B12 daily, plus other B vitamins. And using a patch.

mrsD 12-04-2012 07:59 AM

That MCV is not alarming.

http://www.drstandley.com/labvalues_hematology.shtml

It would be optimal to take your 1000mcg B12 on an empty stomach. Oral use has been tested and found to work in patients with pernicious anemia.
http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

It is also a good idea to use the activated form of B12 called methylcobalamin. Cyano is synthetic and not active and has to go thru 4 chemical steps to become useful in the body.
10 to 30% of people in the US have a genetic error that blocks the activation (methylation) of B12 and folic acid. So taking B12 in methyl form by passes this error. This is very inexpensive...pennies a day.

If you have headache that appears to be migraine, you can also try to improve your magnesium status. Sometimes this fixes headaches. About 70% of people in US are low in magnesium.
Choose a supplement that is NOT oxide form since oxide is not absorbed.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
Aim for 200mg elemental daily to start. This is about 1/2 the RDA for magnesium for adults. The thread explains elemental, and also gives food choices if you wish to do it that way instead.


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