I’ve been having pretty constant parasthesias on both sides of my body usually worse from shoulders down to fingers, initial B12 level was 190 (was 845 four years ago).
New doctor had me test for IF antibodies immediately after giving me a B12 injection which was negative and she stated later the timing would have affected it. Switched doctors and am now on weekly B12 but around day 4 or 5 the parasthesias come back full force and are unrelenting. Prior to starting any injections my parietal cell antibody test was positive but completely normal gastrin - I would assume gastrin would be high as my new dr suspects PA.
Had endoscopy and colonoscopy that showed only patchy erythema so GI doc said I’m normal but afterwards she learned about PCAB positive test and said she’d redo endoscopy because she might have missed something.
What are your thoughts? Shouldn’t gastrin and MMA be high with positive PCAB and wouldn’t positive PCAB lead to IF antibodies?
Neurologist consult said if I had PA I’d have parasthesias on lower legs before anything so it’s not possible. She ordered nerve conduction study and cervical MRI.
would love to hear your thoughts or similar experiences.
Thanks!
Katie
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Katep66875
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Sorry that I can’t answer your questions . But someone will.
Just want to welcome you to the forum . You have come to the right place . Just want to say that about 50% of P.A. patients test negative to the Intrinsic Factor Antibodies. Those antibodies come and go . No one know why . Some people have to be tested a few times before they appear P.A. Is very poorly researched I’m afraid . Many of us have had to find our own way to salvation , This forum is a godsend .
'Neurologist consult said if I had PA I’d have parasthesias on lower legs before anything so it’s not possible.'
I'd dispute that, as mine started in one side of my face, then spread to my arms and finally my legs. PA isn't a one size fits all disease. I know when I need more B12, because the numbness in my face returns.
I don't have confirmed PA, but a Functional deficiency and my pins/ needles/weakness/ feelings of numbness are mainly left hand side for some reason. Yes topszrat I can feel my lhside face numby & sometimes a twitch near mouth when b12 running out. Loading doses recently made it all constant and could feel it in strange places like eyelid, bridge of nose which you don't normally really know they exist. As you say, we're all.unique it seems!
Parathesias is not a definitive symptom of PA. I have never had parathesias. I have anaemia instead. My B12 number on diagnosis was 90. The IFAB three months later was negative.
You probably need every other day injections for awhile until your symptoms calm down. That would prevent your symptoms coming back after 4 days. That is the normal dose when you have the nerve symptoms. You might be able to space them out more later.
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