Thank you PAS: Hi all. Even tho I'm... - Pernicious Anaemi...

Pernicious Anaemia Society

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Thank you PAS

6 years ago•6 Replies

Hi all. Even tho I'm getting the jabs I need to improve my health, my heart goes out to those battling their docs for the proper dosage. I'm beyond frustrated that so many in the healthcare field are not properly trained and or have such a lack of understanding what PA actually does to a body and to the patients mental and emotional heath. It goes far beyond a simple vitamin problem. I believe I wouldn't be here today if it weren't for all of you in this group. You all gave me the knowledge and courage to stand up to pompous primary's who thought they knew it all and fight for myself. When I first found out I had PA, I didn't give it much thought. I was fighting bone tumors in my right leg and actually ended up losing my leg. During the all the ops to try and save my leg, my health was going downhill. I was down to 90 lbs, couldn't think straight, was falling all the time(scary for anyone, but especially an amputee) quick to anger(not me at all) half of my face would go numb as well as my limbs and just overall failing. My GP wanted me to go every 3 mos for jabs after loading, but my oncologists said NO WAY and sent a fax to my gp for once or twice a week jabs for life. I spent the last year feeling sorry for myself that I lost my leg that turned my whole life upside down. But now After mourning that loss, I realize I was pretty lucky. Now that I no longer need my oncologists on a regular basis, my gp wanted to cut my jabs down. I gathered up all the facts and just recently had to fight to not only keep my jabs, but increase as I see fit. I wish I had a pic of his face when I cut him off and politely gave him the facts. Priceless! And all because of this group. So thank you so much. And all who are still fighting their docs to be heard and get the jabs they need, my heart goes out to you. Hang in there💗

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Wowo23

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6 Replies

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Nackapan6 years ago

Good for you. What a truly tough year. Glad you got what you needed. Hope you enjoy life more now.

Ritchie12686 years ago

So very sorry to hear that you suffered so much & what you had to endure, but also good for you for standing upto the so called "professionals" who we used to trust & believed they knew what they were doing but when it comes to PA, unfortunately those who suffer from it & are experienced with it, could teach them a thing or two!

When we have the current health minister in UK telling us to eat broccoli to avoid B12 deficiency then what hope is there!

My Dr told me my B12 level was 124, I was Folate deficient & had PA. When I asked what it meant, he said injections for rest of my life & that was it. If it wasn't for the amazing people on this place & Martyn Hooper's website, I'd still be in the dark & on all sorts of antidepressants & suffering as I was.

I have a feeling ill soon be one of the many that have been told there B12 injections will be stopped, hence why I self inject.

Sorry you suffered the way you did but, what a fantastic attitude to have & I'm sure you will inspire many to never give up!

I wish you well & thank you for sharing.

Take care.

clivealiveForum Support6 years ago

Well done for fighting your corner as in doing so you also help the next patients along.

Take care now.

wedgewood6 years ago

I award you a medal 🥇 for coming through that awful experience , but remaining so positive . All the best for the future . You have given courage to many of us —Thank you .