helen1978s story

Post your experiences of Pernicious Anaemia here. No two people with PA are the same, and sharing your experiences and reading others' may help you through this.

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Re: helen1978s story

Postby anotherwithpa » Sat Feb 02, 2013 1:00 pm

Hi Helen,

I so know what you mean re:"she has now got alziemers which scares the hell put of me knowing the pernicious anemia most probably caused it, i am sorry for sounding like a fool but i am petrified "..my father had undiagnosed B12 def, and alzheimer..he only got B12 treatment after I insisted he got tested..he was 72 and his serum B12 was 136 AFTER loading..poor sole had no chance of recovery.
But on the positive both me kids in their twenties are already on B12 treatment, having found to be def and having told their GPs that PA runs in the family, which meant serum B12 was tested early for them!

Kind regards,
Marre.
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Re: helen1978s story

Postby BeeNumber12 » Sat Feb 02, 2013 4:48 pm

"i am sorry for sounding like a fool but i am petrified and just want my old like back "

Helen, you do not sound like a fool at all. B12 deficiency with or without anemia can be deadly when it is not treated. In individuals suffering complications when B12 deficiency is under treated it is devastating and destroys life in other ways, a little short of death. As long as you realize and treat your symptoms with enough b12 to alleviate them, you should be able to manage all right. There will be ups and downs and the dosage or frequency will like need adjustments over the years, but it can be managed. However....you may have to undertake your own treatment, not rely on medical professionals, at least not in this time. They don't recognized a major portion of the symptoms as being related to being lacking in sufficient amounts of B12: so they leave us untreated. Your children can learn from you, be tested and treated if and when necessary. The knowledge of what can happen to us when left without sufficient amounts of b12 can spur us on to take up the fight to protect ourselves. I haven't read back through your story today, but maybe you would like to consider doing your own injections. Those of us who do seem to fare far better. Have a read of Missy's story for inspiration.

Keep a diary of your problems and check them off when alleviated. Note when and if they return. It is all about balance, it seems. You have good reason to be hopeful, Helen. I sure do understand the panic that comes along with the knowledge, though.

Dorothy
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: helen1978s story

Postby helen1978 » Sat Feb 02, 2013 7:00 pm

I am considering self treating but wouldnt know how or what dosage i dont even know where to order all the things i would need, i get my jabs done at the doctors and i know it begins with H but i dont know the dosage i think i would feel safer knowing i have it here incase my symptoms worsen or worse yet if the doctors decide to stop it, i get bad tiredness at least a month before my injection is due so maybe i could be injecting every 2 months instead of 3 i know my docs wouldnt allow it so if anyone could tell me where i can get evrything from and how to inject would be a help, i remember asking the nurse once if i could have it in my thigh but she said no it has to go in arm to work but i know differently as long as i cant overdose on it or cause harm then i would be willing to give it a go
helen1978
 
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Re: helen1978s story

Postby JDee » Sat Feb 02, 2013 7:52 pm

Hi Helen.

It is quite scary because we do realise most of us are pretty much on our own when it comes to PA and the medical profession. Hopefully this will change in the not too distant future. But for now - finding this site is your first big success. :clap: :dance:

There are plenty of people here who can offer advice (through their own trials) on supplementation of one form or another. No need to feel alone but learn everything you can from now on to help you manage this fairly complex condition.

There are plenty of discussions regarding injections if you want to go down this route. Here is one link.

viewtopic.php?f=2&t=11531&start=164

Jac
Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: helen1978s story

Postby BeeNumber12 » Sun Feb 03, 2013 3:05 am

Helen, Missy's Story has a lot of information about how she approached all that. I am glad you are considering it, even to just have on hand for that month when you go downhill. Eventually you may be okay about using the B12 yourself. :)
Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: helen1978s story

Postby helen1978 » Sun Feb 03, 2013 10:53 am

I have tried looking for the injections i have they are in a light greenish box called hydroxocobalamin but the links on missy story are different colour box's
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Re: helen1978s story

Postby Poacher » Sun Feb 03, 2013 12:30 pm

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Re: helen1978s story

Postby helen1978 » Sun Feb 03, 2013 7:47 pm

so it wouldnt matter if i ordered that type from goldpharma as it is the same as what i am having then? i am sorry if i am sounding dumb its just that i have never thought it would come to injecting myself and i just dont want to be ordering the wrong stuff
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Re: helen1978s story

Postby anotherwithpa » Sun Feb 03, 2013 7:57 pm

Some B12 products have different additives. preservatives, I personally try to go for the ones without, only salt/ saline etc. You have to decide yourself what you are happy to inject, some preparations also contain alcohol benicilico, this gives me an upset stomach, should not be given to babies (can cause some gasping syndrome) etc..also some contain aluminium, its all up to you to decide what you do or do not want to try realy..
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Re: helen1978s story

Postby Poacher » Sun Feb 03, 2013 8:02 pm

Poacher
 
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Re: helen1978s story

Postby helen1978 » Sun Feb 03, 2013 8:09 pm

ok thank you so much for your help will look into ordering i am due a injection on the 27th and will note down when my symptoms return and now i have a back up plan of ordering i will order and inject when symptoms return but i will warn i might be asking for advice on where it has to be injected but thank you all so much for your help
helen1978
 
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Re: helen1978s story

Postby Poacher » Sun Feb 03, 2013 9:29 pm

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Re: helen1978s story

Postby helen1978 » Tue Feb 05, 2013 8:27 am

Ok i dont know if i am being silly but yesterday when i washed my hair and dried it,it felt and looked thinner and i mean alot thinner,everytime i wash my hair some would fall out but not like this my youngest daughter even said it looks thin i dont know if i am being paranoid or even if its stress but i am in a right state now thinking i am going to lose all my hair is there anything i can do to make it thicker i dont want to see the doctor only to be fobbed off again and also i am going to wait till the 27th when my jab is due to ask the nurse about self injecting but i dont think they will allow it but its worth a try and if possible if they tell me i cant self inject is there any videos showing how its done i tried looking at some things on here how to do it but i feel thick and clueless still
helen1978
 
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Re: helen1978s story

Postby helen1978 » Wed Feb 06, 2013 7:38 am

right i have just ordered myself some hydro from goldpharma but i have no idea about what needles i need,i need to go back doctors today as i have just started getting pins and needles in my left foot which is lasting all day which started yesterday and still got now and also about my hair thinning, i know i will most likely get fobbed off again which is why i have ordered the hydro
helen1978
 
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Re: helen1978s story

Postby helen1978 » Wed Feb 06, 2013 12:28 pm

just got back from doctors they have put me on antidepressents they said it sounds like i am depressed and panicking which i suppose i am, i even burst out crying in there i tried telling her pernicious anemia can cause panic and depression but she didnt listen i asked even begged her if i can have more regular than 3 month injections but she said my levels are fine , i admit that this doctor was nice and not snappy like the others but she would not listen to me, i really give up now so i may as well take the anti d's to make them happy and if anything does happen and all my symptoms are because of the pernicious anemia and not depression i think i will take legal advice and take it further but for now i just give up i cant be doing with the doctors anymore,i will be glad for the day when doctors start paying attention to pernicious anemia and not dissmissing us
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