Help needed with Pernicious Anemia.

[Zeday]

Hi. I would like some help regarding pernicious anaemia. History on my diagnosis:

In 2011 in May I started feeling numbness in my feet which gradually moved up towards my waist after a few months. When the numbness started at my feet I had visited my doctor though I was told I was b12 deficient by the time it was at my waist (After some tests and scans). I took b12 injections once a week for a month and then once a month for a year. I was then told to stop the injections. On the 27th of March 2019 I was admitted in hospital. After some tests and scans again I was advised that I have pernicious anaemia. I had taken b12 injection once a day for a week, then once a week for a month and now once a month for life. I also use an oral b12 spray daily.

The feeling in my legs has not been the same from when I was diagnosed with Pernicious Anaemia. I also feel really weak and sometimes can have extreme tired spells during the day. When this happens, it feels like I may fall asleep instantly. There are a few more symptoms which I have like Dizziness, lack of co-ordination, clumsiness, brain fogs and the doctor I had been seeing believed I may have Multiple sclerosis. Though this was ruled out when I had been for an MRI. Is this common for patients with P.A? Is there anything I can do to help the situation?

[fbirder]

Unfortunately it is all too common. Too many doctors will base treatment on blood results rather than symptoms, or the standard advice that treatment for non-dietary deficiencies is for life.

With such a long gap without any treatment the nerve damage will probably take a long time to heal, possible never getting totally better.

MS is a common misdiagnosis for people with PA. A good neurologist will be able to tell the nerve damage caused by PA from the damage caused by MS.

It's quite possible that one injection a month isn't enough for you. Rather than investigating ever more unusual maladies it might be sensible if your doctor tried doubling the frequency of your injections from one a month to two a month. Try that for a year and see if it makes any improvement.

[Zeday in reply to fbirder]

Hi Fbirder. Thank you for the response. I get the feeling that some doctor's do not know much about P.A. When I spoke to my neurologist about my symptoms, he was unable to confirm if the symptoms I have are from P.A.

Could you please let me know if any iron tablets should be taken if you have P.A?

[fbirder in reply to Zeday]

You shouldn't take iron supplements without the advice of a doctor. Too much iron can be harmful.

People with PA also have low stomach acid, which can hinder the absorption of iron (and Vitamin D and folic acid). But that doesn't necessarily mean you will be deficient in iron. That will depend on how much iron you eat and what form it is in. Spinach is not much good (sorry Popeye) but red meat is excellent.

[Zeday in reply to fbirder]

Thank you for the help