FND

[Shirleysy11]

Hi can anybody help was diagnosed with PA last Aug still had neurological symptons was referred to neurologist all tests came back clear and have been also diagnosed with Functional neurological disorder I'm so shock has anybody else glad the same outcome

[clivealive Forum Support]

What treatment was given?

[Shirleysy11 in reply to clivealive]

Hi clivealive. The neurologist wants me to have physio and see a neurophychologist

[clivealive Forum Support in reply to Shirleysy11]

Do you still have neurological symptoms?

I see I responded a month ago as follows and others also commented saying they thought you needed more frequent injections of B12 and possibly supplementation with folic acid.

I wrote:

"If you have P.A. and neurological symptoms you should refer your surgery to the following - especially the highlighted paragraph which clearly states injections are to be given every 2 months - or eight weeks.:

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months."

I strongly suggest you ask for your Folate level to be tested when you demand an increase to the frequency of your B12 injections.

"Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body."

Vitamin B9 (Folic acid) University of Maryland Medical Centre

I wish you well"

[Shirleysy11 in reply to clivealive]

Hi initially had the loading b12 then every 12 weeks . Saw GP last week he has agreed to do them at 8 weeks. I have no idea about my Folate level I don't find my GP very approachable they make me feel like I'm a time waster .

[clivealive Forum Support in reply to Shirleysy11]

Our replies crossed each other.

I'm not a medically trained person but I personally have taken 1 – Folic Acid 400μg every day as a maintenance dose for more years than I can remember and that is in addition to what is fortified into my daily breakfast cereals and I've had PA for 45 years.

I am so pleased your doctor has "seen sense" and agreed to increase your injections