General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


advertisement
Reply
 
Thread Tools Display Modes
Old 12-01-2012, 06:35 PM #1
RMS01 RMS01 is offline
Junior Member
 
Join Date: Dec 2012
Posts: 7
10 yr Member
RMS01 RMS01 is offline
Junior Member
 
Join Date: Dec 2012
Posts: 7
10 yr Member
Default 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
RMS01 is offline   Reply With QuoteReply With Quote

advertisement
Old 12-01-2012, 06:50 PM #2
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 12-03-2012, 06:33 PM #3
RMS01 RMS01 is offline
Junior Member
 
Join Date: Dec 2012
Posts: 7
10 yr Member
RMS01 RMS01 is offline
Junior Member
 
Join Date: Dec 2012
Posts: 7
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk....
Thanks.
Quote:
Originally Posted by mrsD View Post
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.

Quote:
Originally Posted by mrsD View Post
... 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.
RMS01 is offline   Reply With QuoteReply With Quote
Old 12-04-2012, 07:59 AM #4
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
pernicious anemia and MS lolad2 Multiple Sclerosis 6 02-18-2016 12:12 PM
pernicious anemia and MS mikie65 New Member Introductions 9 10-09-2012 12:14 AM
Hashimotos, Pernicious Anemia, low D and iron Libseleven Autoimmune Diseases 4 07-11-2012 11:39 AM
Anyone here with pernicious anemia?? daisy.girl Multiple Sclerosis 1 04-20-2010 07:38 PM
pernicious anemia mymorgy General Health Conditions & Rare Disorders 1 01-27-2010 07:53 AM


All times are GMT -5. The time now is 11:48 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.