Will I Ever Feel Normal Again

[topher2018]

Do those of you who have had this for some time ever regain a sense of feeling normal? I was sitting outside today one week after diagnosis feeling like an alien with a body that functions differently than everyone else. I feel like I am walking around in a body that is a ticking time bomb. I also feel this need to constantly research to figure out the key to going back to status quo as of last week.

[clivealive Forum Support]

I was 30 years old, had a wife with heart problems and two daughters under six when my doctor told me I had two years to live because of P.A. I'd had gastric surgery 13 years before for a perforated peptic ulcer and by 1972 I'd been unemployed sick for three years, been re-trained by the government in book-keeping and accountancy , registered as disabled and was two years into my new job when my doctor gave me the bad news.

By now I had become like a walking Zombie and I think that the only reason I was still "clivealive" in 1972 was that I'd had a "Schilling" test four years earlier which involved my having a massive dose of B12 injected. Sadly the test was "inconclusive for P.A" so I struggled on.

"The bad news is that you are going to die" my doctor said "and that' s within the next two years" she continued.

"However the good news is that you're not going to die if you either eat raw liver three times a day - or have B12 injections the rest of your life." A second Schilling test had proved positive for P.A.

Sadly my wife died whilst undergoing heart surgery nearly 26 years ago but both daughters are married with children.

So, what is Normal? Do I have to go back to my age at 17 when my ulcer burst when I stood six feet four inches tall and weighed a healthy 13 stone four pounds of muscle and bone?

I'm now 77 years old and I think I've learned to live with my disabilities and make the most of what life I've got left.

I wish you well

[topher2018 in reply to clivealive]

Sorry about your wife Clive. I’m glad you have been able to see your grandchildren and appreciative of your advice.

[Wagonwheel in reply to clivealive]

What a heart rending life story Clivealive ❤️

[clivealive Forum Support in reply to Wagonwheel]

Thank you Wagonwheel - the point is that I'm still "clivealive" due to still getting the right treatment which, sadly, so many don't.

[wedgewood]

Yes , I do feel normal again after a long period of deficiency. The worst of it was my GP’s dismissive attitude , more or less saying that I was a hypochondriac. Until I found out how to obtain B12 Hydroxocobalamin ampoules from Germany , to self inject , I really felt desperate . I live alone . My children live abroad . I felt I was on another planet . Terribly isolating .I’d had an excellent relationship with my GP until I was stupid enough to get PA . I was lucky enough to afford an appointment with a private GP at a Nuffield Hospital , who tested me for PA . I took the proof to my GP , who was then forced to start treatment. But I could never get more than 1 injection every 3months — not sufficient for me , but can be sufficient for some . I now self-inject once a week and keep well .

Do not despair ! You can recover . But you need to be patient . Your B12 deficiency happened over a number of years probably , so recovery will come gradually . You just need to find the right treatment by discovering how often you need injections . Have you started any treatment yet ?

This forum is a life saver . You will find good support here . Best wishes .

[topher2018 in reply to wedgewood]

Thanks to both of you. I am so glad this forum exists.

[SuSan78]

I was diagnosed last January after hip surgery. I had been given a loading dose of 6 injections over 2 weeks, about2 years earlier but told by my gp that’s all I’d need. Needless to say I dipped into depression, had gradual memory loss and felt detached most of the time. I nana napped like a boss too. It was awful.

After being diagnosed PA last year and starting the 3 monthly injections I’d feel an improvement for a short time but quickly dip back. I thankfully found this forum and started SI and have found improvements in so many areas of my health since. I know it’ll take time but I know I’m improving and my friends and family are noticing it too so don’t lose hope- you’ll get most of your old self back but it will take time.

[topher2018 in reply to SuSan78]

Thanks susan78. Any chance you were on Xarelto after your surgery?

[SuSan78 in reply to topher2018]

I was only on pain killers. The first day out of hospital I kept fainting and feeling breathless so my gp did a full blood works thinking I may have anaemia.

[topher2018 in reply to SuSan78]

Or other blood thinner/anticoagulant?

[thenotsocrazycatlady in reply to topher2018]

Hi

I too feel dreadful and not normal, spaced out, concussed and unable to function. I have been on usual gp treatment for past 14 months loading doses and then 3 monthly injections. Have been si for past few months twice a week, in stomach not muscle. I am on Xarelto since blood clot oct 2014. Can't understand why I feel so unreal could it be the blood thinners? I used to be severely iron deficient but after regular iron infusions my iron levels are good. I also take a folic acid tablet a day, don't know if I should or not. I also used to be vit d deficient a while back and had to take high doses.i don't think I can still be after all the sunshine we've been having. Just wish I knew why I feel so rough so that I can do something about it. It's a weird feeling like my brain is several paces behind the rest of me. just feel heavily drugged.

[topher2018]

I switched from Xarelto to Eliquis and it seems to have helped with some things.

[squeeler]

Hello ,I don't understand how you feel , I was totally unaware that I had P.A until I saw that my nails had changed from road drilling tools ,to breaking and cracking and ugly nails. Blood test followed ,then by B 12 injections apart from the visuals of my nails I felt no different

[squeeler]

What are you taking those drugs for ???

[topher2018 in reply to squeeler]

Blood clots in legs.

[squeeler in reply to topher2018]

Not Nice !!! there are so many drugs,with odd names. .are they doing you any good ?

Do you wear the socks ? I stopped taking prescription drugs about 3 years ago,and now use herbs, and vitamins,and as such ,,have no horrible side effects from anything

I have just had shoulder surgery. with a recovery time of three months, and have taken the odd Paracetamol,after the op.There is a supplement that is used by people suffering from arthritis,that helps with pain

[Wagonwheel]

Hang on in there! I feel so different from 6 weeks ago when I was filled with the same thoughts.

Having felt wonderful after loading doses, able to do 7 hilly mile runs with strong legs for the first time in years, a week after they stopped I crashed worse than before and with new neuro symptoms. I spent 2 months barely able to get out of bed, depressed with a brain and body that wouldn’t work.

When my gp agreed to bidaily injections I expected the same rate of recovery as with the loading doses but it’s been very different, slow but definitely improving. I get days where symptoms seem to return but they are milder and becoming less frequent. I’m not trying to run as much as it can wipe me out the next day and I’m sure that will come in time.

Eat well, be kind to yourself, try to abstain from booze and be patient.

[topher2018]

Thanks wagon wheel.