Head to Toe Pains -PA?

[miss_m]

Hi all,

I would like some advice on some random health issues I have been dealing with. I was tested a few years back for PA ( as it runs on both sides of my family) and the result came back negative, I feel I should possibly be tested again.

If I can just list my symptoms, I would appreciate any feedback from the community. So here goes: Numbness on the outside of my feet and into my little toes. Painful feet when getting up from bed in the morning. Fluid retention in calves. Cystitis. Severely painful mouth and tongue. Back of throat is full of tiny red veins and sore, I sound as though I am on the verge of losing my voice. Back of my neck hurts which travels into my head. Head pain which is 'crunchy' and very painful which travels into my ears. The worst of it all right now is very deep depression to the point where I seem to be crying all the time, I feel very odd in my thinking and I am forgetting names, conversations, my body feels heavy and tired most of the time, my hands don't seem to grip as they should. My partner says I sigh a lot, when he pointed this out I realised was not sighing but gulping for breath. I am 48, normal weight and until a year or so ago, thought I was fairly healthy and happy. Thank you in advance for any replies.

[jillc39]

looks to me with a list of this you need to see your gp.... let us know what happens. there are people more qualified than I am to give you more advice.

[miss_m in reply to jillc39]

Thank you for taking the time to reply.

[fbirder]

You say you were 'tested for PA'. Did you have a B13 blood test? Can you recall the exact results?

I would go to the doctor and ask for blood tests for B12, folate and MMA (methylmalonic acid, the levels of which build up if deficient in the other two). A full blood count to look at blood cell size, haemoglobin, etc. would also be useful.

[miss_m in reply to fbirder]

I have no idea what test was carried out. I requested to be tested for PA because of the symptoms I was experiencing at the time and the fact that PA is in the family. I rang the surgery for results and the receptionist said no follow up had been requested by the doctor so I don't actually know what the results showed. I presume they were normal. I don't have a good relationship with doctors and only visit when absolutely necessary, preferring to go down the homeopathic route, but this has got me beat. I'm not registered with a doctor at the moment as I've recently moved area but I feel so desperate that I am going to try and register with one tomorrow. I had to visit a walk in centre last week because of the swelling in my mouth, I was given a prescription for a broad spectrum antibiotic without much of a consultation.

[fbirder in reply to miss_m]

It sounds like you may have been given a test that measures something called Intrinsic Factor (IF). If the test gives a positive result then it's almost certain that you do have PA.

However, people with PA will give a negative result half the time. So testing negative doesn't mean you don't have PA.

The three tests I've mentioned above will show if you are deficient in B12 and/or folate. Either or both would produce some of the symptoms you describe.

The sighs was the clinching symptom for me. As soon as I mentioned it to my friends I was told - "You're always doing that, and it's so annoying!".

[Sleepybunny]

"was tested a few years back for PA ( as it runs on both sides of my family) and the result came back negative"

Have you considered getting copies of the tests that were carried out. My experience is that I was told everything was normal but found out it wasn't, when I got copies.

In UK may be a small charge per copy. Some surgeries have online access to a summary of medical records.

nhs.uk/NHSEngland/thenhs/re...

You were told that PA test came back negative. It is still possible for someone to have PA even if IFA (Intrinsic Factor Antibody) test comes back negative. The BCSH Cobalamin and Folate Guidelines mention "Antibody Negative PA" Next link is to flowchart in BCSH Cobalamin Guidelines.

stichtingb12tekort.nl/weten...

Family History of PA

pernicious-anaemia-society....

Other B12 info

1) PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

Interesting blog by Martyn hooper, chair of PAS on website

2) B12 Deficiency Info

b12deficiency.info/

3) b12d.org

b12d.org

4) Pinned posts on forum. I found fbirder 's summary very useful . link to summary in third pinned post, last link in list.

5) BCSH Cobalamin and Folate guidelines

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate deficiency"

Think this is on third page or put "cobalamin and folate guidelines" in search box

6) BMJ B12 article

bmj.com/content/349/bmj.g5226

7) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with UK B12 guidelines.

8) Book "Could it be b12" by Sally Pacholok and JJ. Stuart. Very comprehensive book about B12 deficiency with lots of case studies.

Time is of the essence because untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

I am not a medic just a person who has struggled to get a diagnosis.

[miss_m in reply to Sleepybunny]

Thank you for the info and suggestions. I will have a read through.

[Hillwoman]

When you do see a doctor, I would also ask for a full thyroid panel, because there is huge overlap between symptoms of PA/B12 deficiency and hypothyroidism (though sighing a lot points towards a B12 issue).

A full set of tests for hypothyroidism and Hashimoto's Disease (autoimmune thyroiditis) are:

TSH

FT4

FT3 (really important, this one)

TPO antibodies (abs)

TG abs.

You also need to ensure that you don't have any other nutritional deficiencies - they are more common, and much more important, than GPs will acknowledge. As well as B12, check especially vitamin D and iron - the latter as part of a FBC.