Info about neurological damage?

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I'm not yet diagnosed but I'll be tested for the Intrisic Fator and the other blood test to know if I have pernicious anemia since by B12 level is considered defficient. I wanted to know how can I know it the neurologic damage is going to be permanent or not? Thanks!

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  • Posted

    I can only speak from my experience but I do have PA with intrinsic factor antibody.  I had lost the use of my left leg for 4 months, I had brain fog with short term memory loss, I had neuro sharp pain like pins stabbing me, neuron feeling like bugs were crawling on me, my stomach is painful like serious heart burn or heart attack, and tinnitus to name a few things.  My leg use came back but I have periodic numbness in that calf muscle and where I get very tired my foot drags a bit. My memory has improved but I have permanent brain damage, the pin prick feelings are once in a while along with the crawling feeling. I discovered some mess I had been taking were blocking B12 absorption and perm damage was done. My ears have ringing most of the time.

    Each body reacts differently. I highly recommend you do your research and evaluate the care you are given. Evaluate the Medes you are given as there are many that are very damaging to PA patients by blocking absorption of much needed nutrients. Facebook has a group that you can search, Pernicious Anemia Support Group, that has valuable, reliable information you can take to your doctor to advocate for yourself. The information has helped me receive much higher doses of B12, informed me of co-factors and their function in helping the body process vitamins and minerals.  It explains how to read and interpret blood tests. Managing stomach pain and getting off omeprozole and other PPI Medes that are so dangerous to PA patients. Not managing the stomach issues properly can lead to cancer, ulcers, and rapid depletion of the stomach lining.

    You deserve good medical care and are your best informed advocate.

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  • Posted

    The sooner B12 treatment is started the better but there is no yardstick for how long it will take or how much recovery there is likely to be.  Your doctor should not delay IF testing if he/she has ruled out other causes..

    You need also to ask for your Folate level to be tested - if not already done.

    I'm not a medically trained person but have had P.A. for more than 45 years

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  • Posted

    Hello, I am having blood tests tomorrow for vitamin B12 deficiency, I have MS and my Dr just kept fobbing me off saying we know what this is, I pushed for a neurologist appointment and finally got one, after seeing him twice over two and half years he agreed to send me for an MRI,in February I've just had an appointment with him in august after he asked my Dr twice, to refer me to musculoskeletal. I've yet to get an appointment. I have aot of neuro symptoms that feel like Ms but my neurologist says he doesn't think my ms is driving this. I went to my friends Dr registered temporary and she's sent me for blood test. My own Dr in response to my neurologist pushing for referral has asked me to find another Dr. I was diagnosed with reflux by a consultant at a hospital again another referral by a temporary Dr and was on meds. Although my symptoms were prior to this I don't think the meds can have helped. I'm scared it's not vitamin B12 and then I've nowhere to go with this. Good luck everyone struggling in pain and I hope you recover well. 💜?

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    • Posted

      Can you ask to have your Folate level tested as well as the B12? 

      There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

      Any PPIs such as lansoprazole will have an adverse effect on your absorption of B12 via your digestive system as they lower the acidity needed to process it.

      You might also ask for your Vitamin D level too as this seems to be "flavour of the month" just lately.

      I'm not a medically trained person but have had P.A. (a form of B12 deficiency) for more than 45 years

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