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Pernicious Anaemia Society
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Suffering from PA for long

I am suffering from PA for some years now. It got undetected(rather not diagnosed properly) for long and finally became very weak and end up with severe neurological symptoms like... extreme fatigue, severe body ache, joint pain, extreme brain fog, eye strain, not able to concentrate on anything, weight loss, balance issue

Dr advised me to have injection Neurobion forte weekly and informed me that am having absorption issue. After having injection for 3 months, now am observing some improvement in my symptoms. Tiredness, balance issue and fatigueness have come down.

This disease has brought severe losses for me in life.

Now that, am getting some positive response, am hoping to come out of this extremely bad phase of life soon.

I have been going through the experience of others through this portal and got some very informative knowledge on this disease.

Best Regards

Mahesh Gopal

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Most patients with PA find that they can only truly benefit from B12 when it is injected , because they have antibodies to the Intrinsic Factor which prevents absorption of B12 , as IF is destroyed . The parietal cells which produce stomach acid are also affected .Stomach acid is also needed for B12 absorbtion . B9(folate in food and folic acid in oral supplements) is needed to act with B12. That's why i was surprised to see that neurobion does not contain any B9 . Have you been advised to take B9?

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Hello Wedgewood,

Thank you so much for your reply.

For me, my physician has adviced me to do only Neurobian forte injection for B12, as my Folic acid level was with in range.

Do we still need to have this B9 along with B12 injections..?

Best Regards

Mahesh

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Well, we PA patients mostly take extra B 9 (folic acid /folate ) routinely , as we know that B12 only functions properly if there is sufficient B9 present . Also if you have been deficient for some time , it will take as long for you to recover completely . So don't get impatient ! Some times one cannot recover 100% . But stay optimistic and patient ! Also make sure that you have an all- round healthy diet .

Best wishes to you .

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Thank you so much for letting me know of this Folic acid. I was not aware about this. Will talk to my Dr regarding this.

Best Regards

Mahesh

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I'm not sure that this is the consensus though.

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Well there are a few articles and presentations by doctors and I think there is enough science to follow Dr. Ben Lynch's view. Another member on here put me onto this track. Why risk Folic Acid if you can eat your leafy greens or take methylfolate drops.

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Considering the potential side effects of methylfolate, it is not without risk itself.

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I am suffering from PA for some years now. It got undetected(rather not diagnosed properly) for long and finally became very weak and end up with severe neurological symptoms .

My B12 level was 123. Now am on weekly injection for the past 4.5 months. Though there are few improvements am observing regarding my neuroligical issues like balance issue, concentration, body pain, eye strain has come down. But many times I observer severe fatiguness and body pain.

If I continue with the weekly injections, can I get a full relief from this B12 issues.

I am wondering, if at all this will fully go. I am not able to lead a normal life due to this. Many days I will be struggling and down with the issues ...

Many Thanks and Regards

Mahesh

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Hey i m also from india.. Nd b12 defcient.. How U feel now?

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Hello Shalinee,

Am still getting treatment. Weekly injections... hows your health....

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All symptoms is cure.. But balnce problem is still there whenever i go outside i feel i m nt able to stand straight up.. Nd feel going to fall... Hws ur balnce now?

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I m vry hopless seriously ..my balnce prob /dizziness symptom is really worse ..its almost 4 mnths since treatment start..

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Hello Shalinee Sad that you are also suffering with these issues... I could understand how its to have these kinds of probs. For me, even though am having injections... all my issues are not fully getting rectified. But I would say, a lot better with injections. Do not loose hope... keep having injections... I feel, slowly you could also see your remaining probs getting away....

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Fir v apki balnce kitni improve huyi h i mean.. Kit percent kh skte ho its cure? Only balance is bothering me all time

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For me balance issue also comes in between... but as I said... with injections the total quality of life has considerably improved.

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