I was given a PA diagnosis based on IF and PCA testing. I was not told to remain off B12 for at least 2 weeks before testing so may have false positive.
My endoscopies are clear with no damage. My GI doc says that it’s possible that PA had not damaged my stomach and that I’m confusing autoimmune gastritis with antibodies to IF. I’m confused by this.
I’ve been getting injections once a week since July 2022 but have been deficient for over 10 years. My symptoms have all resolved except I often get nerve pain in the night while sleeping (nerve pain in the abdomen and top of my thighs only). GI doc says this is neurological since there are no GI findings.
I live in Canada so I’m not worried about losing a PA dx since I self inject with over the counter B12 anyway and will continue to do so. Are there some people who respond very well to B12 and have no GI issues with PA??
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Bluebell7575
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It could be a good idea to tactfully write to your doctor, with the links to BMJ research document and UKNEQAS, etc. which contain more information on testing, diagnosis and treatment - all too complex to detail - but, basically, once B12 injections are given, B12 levels will usually rise regardless and it would take many months not weeks to leave the system……..
Thank you Polaris! Which Dutch link are you referring to? I would love to review that link. I’m in Canada and so far each doctor/specialist has shared that they do not have any or very few patients with PA.
You probably know that, far from being rare, it’s quoted in the BMJ research document as being common, but many doctors here seem reluctant to acknowledge this or treat with frequent enough injections - why many of us have to source and self treat to be able to function !
PS. Some that I’ve found from old ipad but not sure if they still work :
bmj.com/content/349/bmj.g5226
(Summary only but GPs can Access Document)
UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections (even if B12 is within normal limits).
(Misconceptions About B12 Deficiency):
(B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and without large red blood cells)
stichtingb12tekort.nl/weten....
B12 Deficiency and Intrinsic Factor (I.F. Can Be Negative and Still be PA)
Hello Bluebell7575, I am sorry for your confusion and frustration. I don't know if this is helpful, but when you said you have abdominal pain in the lower abdomen and top of legs, It rang a bell with me. I have suffered from that type of pain for decades with no answers except IBS or lumbar pinched nerves. LOLOL Also, yesterday, my new hematologist, said he isn't sure I have PA and that my IFAB test could be a false positive since I had started my loading doses when I took the test. This has me very frustrated and confused now. I thought I finally had a diagnosis after 3 decades and now I am not sure. But the pain in my abdomen has gotten much better since I started B12 5 months ago. does your abdomen bloat if you just do the slightest strenuous lifting or pushing? Mine used to look like I was 9 months pregnant. I couldn't wear pants my first 4 months on B12. I have only just started to be able to put on pants. I am going for a SIBO test on November 16th to see if that is what is wrong with my small intestine. Perhaps that is what might be wrong with you.
I also had endometriosis with adhesions and 4 abdominal surgeries, so I always blamed my abdominal symptoms on that, but the B12 has improved it considerably. Perhaps you need more B12? or perhaps you have SIBO?? I feel like perhaps b12 has finally woken up my small intestines and bowels. But I really don't know or have an answer anymore since they are trying to take away my positive IFAB. My B12 was only 221, and everything else is within range according to them. I do have some gastric issues they found in an endo, but no parietal cell damage. So now they don't think I am that bad. They weren't here when I was unable to walk for 3 months. or for the past 38 years so who are they to say anything? I go by my symptoms and B12 has helped me more than anything ever has. So I am sticking with that. I inject daily if I need to but am trying to go EOD or longer. Now this new Hematologist, thinks I have too much B12 and is telling me I don't need to inject everyday and to go to once a month. LOLOL NEVER! He thinks I am going the other way and getting too much b12 back up. I don't think I am. They are running more tests so I will let you know if I find out anything. You seem to have a very similar issue as me. So I hope I can help if they give me some answers.
Oh and when bending to pick stuff up, I lose all my abdominal muscles and the pain is excruciating that I can't even bend over or lift anything. That still happens if I over do it. Swinging my legs forward when walking was very difficult and painful and my legs are very weak. Also, a l sight incline is very difficult for me to walk up, stairs and curbs. Or it was. But with B12 daily, that has improved by 90%. I used to crawl around so I didn't have to bend over. I have a reacher/grabber tool now that picks things up for me. But my pain is much better after 3 decades. So I am inclined to think the B12 is why. I sure hope you find the answer. and I will let you know if I find out anything. Good luck to you
When I searched online for "B12 deficiency guidelines Canada" I found a couple of links to Canadian health documents.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK but there may still be some info of interest to those not in UK.
Thank you sleepybunny, I am going to be looking for some information that I could give to my new hematologist. I'm sure your links will help. Even though I'm in the US, we don't have any of this kind of information that I can find. Whenever I find information it's always UK information. So if I can Enlighten these doctors with UK information that's great. I think you guys are further along than we are. There are no US resources that I can find. So I am definitely going to give them some printouts from your links. Thank you!!
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