Newly diagnosed

[Pinkxe]

Hi all,

I was diagnosed with PA last week after a month or two of symptoms. From what I have read, my symptoms are pretty mild in comparison to other peoples experiences. It was the advanced nurse practitioner who I seen and I am so grateful to her for getting me this diagnosis so quickly as the GP was pretty dismissive in ‘all women get tired etc etc’. I start injections at the GP in two weeks as I am going on holiday this week.

I am looking for both advice and positivity. Do you think it is ok to wait and start the injections in two weeks? I don’t have severe symptoms but I am worried about doing myself any damage. I have bought the better you spray and have been using that in the meantime. Secondly, I am looking for people who have this in a mild form like I do to share some positivity. I am really scared by this diagnosis and am looking for some experiences which will make me feel there is hope and I will feel better. I am only 34 and this feels a bit like a life sentence. Thanks so much.

[Popcorn12345]

What r ur symptoms

[Pinkxe in reply to Popcorn12345]

Mainly fatigue, headaches, pale skin and feeling a bit sick. I have had very light tingling in the tips of my finger but that’s been few and far between.

[Hockey_player in reply to Pinkxe]

With tingly fingers, it is good to start with every other day loading doses. If you can't get your doctor to do that, there is lots of info here. I prefer having my husband give me injections. I can take them as often as I need to without the hassle of going to the doctor's office. It is good to have the first one in a medical setting just in case you have a rare allergic reaction.

[PlatypusProfit8077]

I’m 36 and it is definitely intimidating staring down the barrel of a lifelong thing like PA. I’m glad you’ve gotten diagnosed so early though, before you had debilitating symptoms.

I’m still at the Learner stage for this as well but I’m on injections and couldn’t cope without them, even for a holiday.

[GoneWithTheWind1972]

If I could turn back time, I’d advise myself to do the injections without fail before symptoms get worse. Start with the loading doses or start with one or two before you go on holidays. If you experience fatigue and some tingling in your fingers, then you’re experiencing some neurological involvement. The sublingual treatment most likely won’t help with PA. Injections bypass the gastrointestinal system. You are very lucky to be diagnosed early so, won’t be affected detrimentally. It’s a matter of understanding this condition, treating it accordingly and getting with your life. You are young and can live a long and healthy life with this condition as long as you are treated correctly. Learn all you can about PA. This forum and the advice from others here is a lifesaver. Join PAS (Pernicious Anaemia Society, separate from this forum) and you will be much rewarded. Best of luck and stay positive.🤗🤗🤗

[Pinkxe]

I’m away tomorrow so I can’t start them. I start a week on Monday so I just have to try and forget about it and hope that will be ok as all of this worry about doing myself damage is making me more ill than what the symptoms I have are actually making me. Thanks very much for the support. I’ve read a lot of scary things online since being diagnosed and I think I need to take a step back from it all.

[bookish in reply to Pinkxe]

Try not to worry too much. You have been caught early and will be getting injections soon. You may well still be able to get some benefit from the Better You spray - many can, especially in the early stages, and you'll soon be able to tell if it is helping your fatigue etc. Just don't rely on it alone, you need the injections as for neurological involvement, ie plenty of them, regularly. Stress will deplete what B12 you do have. You might find magnesium helpful - I use the Better You spray each night. Many people have years of damage to try to reverse and still make vast improvement. Enjoy your holiday and do some more reading when you get back.

[Pinkxe in reply to bookish]

Thanks so much. I really appreciate your kind and reassuring words.

[Hockey_player]

Yes- it is a life time sentence. But nothing to be scared of. With adequate amounts of B12, you can have a completely normal life. It's awesome they caught it early!

[Pinkxe in reply to Hockey_player]

Thanks so much for the positive words. It is so much appreciated.