I was unsure where to turn and you guys are my last hope!
In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue.
I then had an MRI which revealed lesions on the brain (5 white matter lesions).
Blood test results show my B12 is low/normal but folate low, High Homocysteine levels and Methylmalonic acid levels normal (212) but also Positive for Anti Gastric Parietal cell antibody and negative intrinsic factor antibody.
I have also been having Ectopic beats for a few months now regularily.
Have been told since then that we have Pernicious Anemia in the family and all of my family members have this with similar symptoms.
Could this be Pernicious Anemia and not MS? ( my neurologist constantly says no ) but i feel like everything is far too coincidental... If anyone has any knowledge on this I would really appreciate the help.
Written by
smileysammi
To view profiles and participate in discussions please or .
Well I have heard of cases of P.A. being mis-diagnosed as MS . It is not all that rare to hear this . The symptoms that you describe are just like I had. I had palpitations for several years , Sometimes I fainted , but still my doctor told me to ignore them . Tingling in my feet eventually turned to numbness . Exhaustion , breathlessness , confusion also .set in High homocysteine as well I got a private IFAB test , which was positive. So P.A. was proven .
But if you read the posts on this forum , you will know that this test shows up negative in about 50% of P.A. patients . Also you can have a normal B12 level and still have P.A. — The medical profession is so very ignorant on the subject of P.A.
I don’t want to give you false hope , but reading that P.A. is in your family , it’s quite possible that you have P.A. B12 injections would help you enormously if this is so So talk your doctor into you having them . First loading doses of 6 over 2 weeks and then every other day until no improvement . B12 is harmless even if you do have MS . You cannot overdose on it . Also very cheap ( I have to self-inject as I need more than G.P. will allow me . Cost is about £1.50 for an injection -everything included .) Very best wishes .
Hi, thank you so much for your reply and advise it means a lot!
My neurologist is kinda making me feel like I'm crazy but I just have a HUGE feeling it's all PA and not MS but no one seems to understand so on here I thought everyone might!
I am going to try and get them to get me some injections some how!
I have read articles that suggest that SACD, sub acute combined degeneration of the spinal cord (due to B12 deficiency) can be misdiagnosed as MS in some cases.
It's just a lot... they contradict themselves and are not even open to the idea of exploring... and as he said based on my MRI. But honestly I have been having thinking problems and fatigue since i was around 16 and I doubt MS would develop from that stage...
I guess your best bet is to get b12 injections, that way you will benefit regardless. Maybe your g.p. will be open to giving you at least one (cant do any harm) that way you would be confident in knowing you dont get a reaction and confidently go forward in injecting yourself.
Neurologists know very little about B12. And they know very little about MS, since they thought it was an autoimmune condition but evidence shows it to be caused by a virus.
Push push push your GP for blood tests and injections. Your neurologist has already moved onto the next patient.
Hello! Just because you have low normal B 12 levels it does not mean you do not have PA. That was the reason so many doctors missed my diagnosis. I had a low normal B12 result, in the 300’s then 400’s after taking B12 pills but my neurological symptoms were extreme tingling burning etc, To the point of actually barely being able to walk. Since B12 deficiency affects everyone differently and your symptoms are common to PA I would definitely not rule it out. Best thing if the doctor does not diagnose you with PA is to try and self inject B12. You cannot overdose on the B12. I am blessed to have a doctor that works with me, I take 2x B12 1000ml a day. Most people don’t need so much. Also I’m in the USA. I hope you really find the treatment you need. It’s so hard to be sick and not being treated properly. Hugs to you!
Positive Anti-gastric parietal cell antibodies WITH low b12 deficiency is considered indicative of PA. APC test doesn’t have the same specificity as intrinsic factor testing so I think clinicians look to see low b12 in conjunction with being positive for anti Gastric parietal cells as enough for PA diagnosis, provided that thyroid conditions, diabetes or Addison’s disease are not present (these can be other causes of positive APC results). I’m APC positive and was really b12 deficient and clinicians seem happy to classify this as PA, whilst repeatedly testing as intrinsic factor negative.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Intrinsic Factor at top of range
Potential Problems with Injectable Methylcobalamin. Advice Needed Please
Test results for Intrinsic factor antibody level
How long does it take to see an improvement
New to all of this Pernicious Anemia Confused about physical response?
