Hi I am sure this has been asked many times before so sorry for asking. I have had PA for over 33 years and for most of that time l have managed to just get on with it as best l can but for the last few years it has been getting harder. First l started to feel like a balloon was zooming around my head and my ears were filling up. After an MRI l was told that my problem was very much like a computer that was trying to do too many things at the one time and it needed to be restarted (their description not mine) and l had about 6 months physio to help with my balance and keep my stress levels down (they said stress made it worse). I have managed to work through these and get my life back on track at least until last October when l got a virus and then the flu. After the flu went l was left with aching upper arms and then later with a tingling/numb thumb (like the sensation you get after having an injection at the dentist). Have seen my GP twice and both times she just said l was depressed (which l don't think l am) and on the second visit gave me some pills for the pain in my upper arm and thumb but she also made me feel like l was an inconvenience. These just made me sleep (not that l need to sleep anymore than l do already) so l haven't been back since. I have still had pain in my upper arm especially if l move it too high or twist it without thinking and on Friday l did something without thinking and the pain was terrible and for a moment the pain stopped and l couldn't feel my arm and then the pain was back so l have made an appointment for tomorrow. I am going to ask for the results of all the blood tests they have done because it could be down to my PA (have told them this but they won't listen) but they have said my levels are fine but l am sure l have read that it needs to be the serum levels they should check but l am not sure what to ask so was hoping someone could help me.
Thank you all so much for reading my long post.
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CraftyKit
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"I am going to ask for the results of all the blood tests they have done"
"they have said my levels are fine"
Good idea...I learnt from experience that being told everything was normal/okay didn't always mean that it was.
Best advice I ever got was to always get copies of all my blood test results. In relation to B12 deficiency, I look particularly at B12, folate, ferritin (or other iron tests) and full blood count (FBC).
If you're in UK, look at BSH, NICE CKS and BNF links for details of UK recommended treatment. Patterns of treatment vary from country to country, type of B12 used can also vary. NHS usually uses hydroxycobalamin for injections.
UK recommended treatment for B12 deficiency without neuro symptoms is....
6 B12 loading jabs over 2 weeks followed by jabs every 2 or 3 months
UK recommended treatment for B12 deficiency WITH neuro symptoms is.....
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Tingling and balance issues would usually be considered as neurological symptoms.
Do you have other neuro symptoms?
Are you on the UK recommended treatment pattern for those with neuro symptoms? UK GPs sometimes don't realise that these patients are supposed to get more intensive treatment.
If your symptoms have deteriorated and the GP has excluded other possible causes then they might consider repeating B12 loading doses.
Have you seen a neurologist? There are many possible causes of neuro symptoms besides B12 deficiency.
Has your GP ever contacted a haematologist for advice? NICE CKS link advises this for patients with B12 deficiency with neuro symptoms.
It's vital you get adequate treatment. There is a risk of permanent neuro damage if B12 deficiency is under treated.
Have you considered joining PAS (Pernicious Anaemia Society)? They may be able to intervene on your behalf or at least point you to useful info to pass to your GP.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PA is an auto immune condition. Having an auto imune condition can increase chances of developing another auto immune condition. Has GP excluded possibility of other conditions eg Thyroid problems, Coeliac , Rheumatoid Arthritis etc.
Might be worth putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests as well as TSH.
Coeliac Disease
NICE guidelines Coeliac Disease (2015 version) UK document
"they have said my levels are fine but l am sure l have read that it needs to be the serum levels they should check"
There are forum members with PA diagnosis who have had B12 levels checked and then had their injections stopped because serum levels were high. This is a partly why it might be worth joining and talking to PAS before tackling your GP.
PA treatment is for life.
Help for GPs
PAS website has section for health professionals which your GP might find useful. They can join PAS for free as associate members.
I wouldn’t automatically assume your problems are down to PA. The symptoms you describe, if I have understood them correctly could be down to a rotator cuff issue in your shoulder. That is fairly common as we age. My advice is to describe the precise issues you are getting to your GP. I have this problem but it’s nothing to do with my PA. Good luck with it and do let us know how you get on.
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