Survey

[Cwilli]

1. When where you diagnosed with pernicious anemia?

2. How offten do you have B12 shots?

3. Did you start feeling better at some point after starting treatment?

4. What is your quality of life compared to before diagnosis?

This is just for my personal use. Having recently been diagnosed with PA I am hoping I will see encouraging remarks that at some point we will feel better again.

[Foggyme Administrator]

Hi Cwilli. Please could you explain a bit more about the title of your post 'survey' so that forum members are clear what they are responding to (i.e. Is the information going to be used for any specific purpose or do you just have a personal interest as a fellow sufferer?).

Thanks 👍

[Cwilli in reply to Foggyme]

Of course. I am just wondering for my personal information. Mostly I am wanting to find out ... does it get better?

[clivealive Forum Support]

1. When where you diagnosed with pernicious anemia?

!972 at my local surgery

2. How often do you have B12 shots?

Cyanocobamalin 1000mcg (now) every 3 weeks

3. Did you start feeling better at some point after starting treatment?

Definitely within months

4. What is your quality of life compared to before diagnosis? Indisputably better

My 13 year journey to getting the diagnosis was the worst part. Read "My PA Story" in my profile

There is life after P.A and I'm still "clivealive" at 75

[Cwilli in reply to clivealive]

Thank you clivealive. Yours is an encouraging report. I will definitely have to read your story when I have time.

[topazrat]

1. October 2016, although I had symptoms for 25 years before I demanded testing!

2. Weekly (DIY jobbie, as my G.P. is as much use as a chocolate teapot)

3. It's a very slow improvement day on day, rather than a quick fix.

4. Much better - I can go out for a walk without thinking that I am about to die now.

[Cwilli in reply to topazrat]

Thank you topazrat. Chocolate teapot ha ha. !

I am sorry you went so long before being diagnosed. I went to several different doctors some of them more than once. I got everything from your depressed to "you are just going through the change of life no getting out of it" when I told a heart Dr my heart rate was going to high too fast he simply said well don't walk so fast slow it down you will be fine. I got letters from them your results were normal you're fine. Of course they were not running the right test! I honestly don't know how long I have been sick but I thankful finally found a Doc that did not blow me off and who dug a little deeper and found the problem.

[topazrat in reply to Cwilli]

Oh that sounds so familiar! I even had a bout of anemia about 10 years ago - a mixture of macrolytic and iron deficient. But they ruled out P.A. because I was (wait for it) too young and didn't test my B12! Told me I was a silly girl and that if I continued to not eat properly (I was) then I should start to take a multivitamin and iron tablet a day. As bad as it sounds, I think those pills were the only thing keeping me alive. The penny dropped when I spoke to my parents, who both have P.A. and they told me their symptoms. Went back to the Doc, who told me it was all in my head - so I refused to move until she did an I.F. and Parietal test. Surprise, surprise, they were both positive!

I had problems with a fast heart too. It was sometimes hitting 180 during a very slow walk! I got blue lighted into hospital with chest pains a couple of times.

Since starting jabs, it's still goes high, (around 120) but nowhere near as scarily high and it's dropping slowly but surely as time goes by. Cardiologist scratched his head and sent me for loads of tests. Hmm maybe you've got an extra nerve pathway - oh well, it won't kill you, just live with it. Charming.

[Cwilli in reply to topazrat]

Wow. Just wow. And if they would have just taken your family history they would have had a huge clue.

The good Doc that found my PA also told me I was anemic and could tell by a test she ran that I had been for a very long time. All those other docs did not ever tell me that. But I am thankful for the goods ones. Have a blessed day.

[topazrat in reply to Cwilli]

Mine still haven't told me officially that I have P.A. They just said that I needed injections for life, not even what the injections were.

Luckily, being an ex-nurse I knew what positive I.F. and parietal cells meant. If I hadn't have pushed so hard for a diagnosis, I dread to think where I would be now.

[Cwilli in reply to topazrat]

Thankfully you did not give up! Your story inspires me. Thank you for sharing.

[bquoss]

Glad you've been properly diagnosed, Cwilli. My diagnosis took a few years after it became difficult to walk (peripheral neuropathy). Even after I lost 25 pounds suddenly and showed abnormal red blood cells, only iron deficiency was diagnosed; a gasterontologist found "only gastric atrophy". I praise the doctor I was with then, because she kept checking and eventually diagnosed the PA and put me on injections 2 x week for life. Without loading doses, it took years before the neuropathy became only residual. I do have some mild cognitive impairment still, but I've learned ways of compensating. Generally my quality of life is better than most 80 year olds, as I walk regularly and do yoga. But then I am usually too drained for socializing, which takes more energy than I have. I tell people it's not a problem of being too tired, it's a problem of not having much energy to begin with, so I have to ration it. Age has an impact also, of course. I live with other seniors and consider myself lucky because I am mobile and see a doctor only for annual visits. I believe the B12 shots benefit long-term health. Good luck with your recovery.

[Cwilli in reply to bquoss]

Yeah I so get your comment about not having the energy to begin with and haveing to ration what you do have. That so describes it.

Good for you on going to yoga!!!! That's what I am talking about!! You go girl.

[sirlam]

Hi. I was diagnosed July 2015. A very lucky person - diagnosed with PA on my first blood test. Symptoms - dementia, fog, exhaustion of course, breathlessness sometimes, pins and needles in hands, balance problems, vision problems. 2. I had 5 loading and then (because I argued) two monthly jabs. BUT within 4 months on this regime, had new neuropathy (no sensation from my bladder - zilch!) so I decided to SI starting April 2016. I went for the every-other-day jabs (as recommended by the BCSH) Result - after two months, hands were mostly normal again; two months later, got my bladder back (YAY!) and found my balance and vision on the mend but variable still. 4. My quality of life is OK; I am not getting any younger (63 this year); if I get ill, or stressed at work, I am now recognising this wipes my B12 and I now hit back by upping my SI to daily if needed! I am currently on a jab every 4 days.

Hope this is reassuring and best of good luck with your own B12 journey!

[Cwilli in reply to sirlam]

Interesting every 4 days. I am glad to hear you made improvements my increasing jabs. I too find work stress so difficult. You are doing great at 63!

I am finding we have to be our own health advocates.

What does SI mean?

Thanks a bunch!! 😀

[Bengie in reply to Cwilli]

I don't think I could Self Inject and anyway I only have a prescription for the injections not the needles. I don't have enough muscle in my arm so have to get injections in the butt so how could i give them to myself?? I wish I could though. My doctor doesn't seem to believe my symptoms but the nurse is always willing to give me injections when my body tells me i need them. I just hate self diagnosing myself and want reassurance that I'm doing the right thing. I'm 25 years getting injections but recently my symptoms are getting worse and I feel awful. I'm 68 years old.

[Cwilli in reply to Bengie]

Bengie I am sorry you are feeling badly. It sounds like you may need a good checkup with labs to test you B12, iron,vitamin D, thyroid exact... other things can be going on. And you should not have to be guessing! You may want to think about putting some time towards finding a good functional doc who will help you find out why you are feeling so poorly. And I don't blame you for not wanting to self inject. I do t like to do it ether. I feel for you and hope things improve. Keep us posted.

[Bengie in reply to Cwilli]

Thank you for your support and because I have now complained of memory loss the doctor is sending me to hospital for tests. I hope it shows up ANYTHING at this stage as I feel I'm going out of my mind but I know how I feel but can't explain it properly.

[Cwilli in reply to Bengie]

Good luck Bengie. I too hope they find out what is making you feel bad. You might write out your symptoms and detail how you feel and what you are experiencing before going to get the test done. Then had it to the DR. Sometimes it is easy than trying to remember on the spot.

[Bengie in reply to Cwilli]

Will do. Thank you for your support. It's a good idea as I forget anyway!! Lol

[sirlam in reply to Cwilli]

Sorry - ‘SI' is self inject. I buy the vials of B12 (hydroxycobalamin) from a German company and the other stuff (syringes, needles, alcohol wipes) through Amazon or similar. It is easy to do and makes you feel so much better because you are in control of your own health, not in the hands of well-meaning folk who often have misconceptions about our condition...

[Cwilli in reply to sirlam]

Yeah I hear you on that. And smart to get your other stuff from Amazon.