just diagnosed

[emmar153]

hi, I'm Emma and I've just been diagnosed with PA. I have had a pretty rough ride the past few months as this has hospitalised me, and caused me so much mental and physical pain just to be diagnosed.When I got hospitalised due to having severe numbness in my hands my mum made them do a B12 test, 2 months later I get the my result and my result then when the test was taken was 131 when it should be 200-400 I was told so goodness knows what it is now. I'm just wondering if anyone has any advice? I'm currently a student is it something to tell my tutors about or is it something I have to tell employers when looking for a job? Any advice appreciated

[fbirder]

If I were a student then I would tell my tutors and explain that some times I may be worse than other times. So I might have problems with brain fog when my treatment is due and would sometimes appreciate a couple of days extra for assignments etc.

If an employer asked about health issues I would tell them I had a B12 deficiency that was being treated by vitamin supplements. It's very likely that they would think nothing of it.

I'm presuming that you are getting proper treatment (which may depend on where in the world you live).

[Gambit62 Administrator]

PA is a long term condition that can affect your health but only if you aren't being treated properly - or if it was left too long before treatment started with the result that you had neurological damage. It would probably be wise to make sure that your tutors are aware as the symptoms of the B12 deficiency that you are currently experiencing will be affecting your performance.

Hopefully you are now getting the treatment you need so the effects of the B12 deficiency that PA has caused - and these are the symptoms of PA - will have been corrected and you will no longer be B12 deficient when you come to applying for jobs. Aside from not being able to absorb B12 from your diet and needing to top it up by other means (generally regular injections) it isn't something that you would need to inform prospective employers about.

Having said that though it can be difficult to get the treatment that you as an individual actually need as there is a tendency to just follow standard guidelines rather than treat people as individuals.

There are some good materials on the PAS website including leaflets you can provide to employers etcs explaining how PA affects you. Some are just available to members though

pernicious-anaemia-society....

joining is very easy and does give you access to some practical support that won't be available just through using the forum. Those on here who are also members have found it a useful source of information and support.

On a personal note I suffered 40+ years of depression and anxiety that went when I managed to get my B12 levels stabilised where they need to be. My employer knows I have a B12 absorption problem but only because I chose to say something - I don't have B12 deficiency any more. My previous employers previously knew about my problems with depression and anxiety. In neither case was I under an obligation to disclose. I certainly wouldn't regard my B12 absorption problem as being something that affects my ability to do my job or even impacts on my life much other than knowing what happens if I don't keep my levels where they should be. Getting my B12 levels right was like getting a life that I had never had - so there is no reason to think that it is going to stop you living exactly the sort of life that anyone without an absorption problem leads.

People with diabetes live perfectly normal lives - aside from having to monitor and manage blood sugar and insulin levels. On one level B12 is much easier because there isn't any testing involved in managing levels - just being aware of symptoms.

[Sleepybunny]

Hi,

I've assumed you're in the UK.

Are you a PAS member? They are helpful, sympathetic , a good source on info and can intervene sometimes on members' behalf.

pernicious-anaemia-society....

PAS tel no [phone]

Link to article about Students and PA

pernicious-anaemia-society....

What treatment are you getting? a lot of people on this forum struggle to get the correct treatment.

I'd suggest reading "BCSH Cobalamin and Folate guidelines" particularly page 8 which has details of Uk B12 treatment and page 29.

I'd also suggest reading all the pinned posts on this forum.

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn hooper

"Could it be b12" by Sally Pacholok and JJ. Stuart

I am not a medic.