Living with PA

[Ithinkimdying]

Today i woke up stiff i couldn't walk fully. I tried to stretch and my muscles still feel terrible and both my knees constantly pop. So here i am 25 limping around trying to catch my breath. I'm doing injections every other day and monitoring my potassium. But my big question is is it possible to end up chair bound even on injections? Alot of days my legs hurt so bad i don't know what to do! I wake up like i had a rough day the previous day and i didn't do anything but laundry and dishes

[wedgewood]

As we are all different , it can take sometime to regain what we have lost by incorrect or no treatment. Try to be patient. Your condition took a long time to develop, and you mustn't expect quick recovery. Try contacting the PAS --- they are wonderfully understanding and very importantly, knowledgeable. You do have youth on your side though! We are all rooting for you! Very best wishes.

[Ithinkimdying in reply to wedgewood]

Im a member but how do i contact them? Im in the states

[clivealive Forum Support in reply to Ithinkimdying]

Hi Ithinkmdying what an apt named - I think all on here have felt like using it at one time or another.

I'm not sure if this is going to be of any use to you but the P.A.S. contact details are:

If you have any questions about Pernicious Anaemia we would love to hear from you.

You can also follow us on Facebook, Twitter or YouTube.

Head office: 01656 769 717

Registered office: Level 4, Brackla House,

Brackla Street, BRIDGEND, CF31 1BZ, U.K.

To telephone from the U.S. could be expensive and the time difference would have to be factored in too.

Have you been diagnosed with B12 deficiency or P.A?

I'm not a medically qualified person but I do know a little of how you are feeling.

I'd had gastric surgery for a perforated peptic ulcer at the age of 17 in 1959 and by 13 years later in 1972 I was "living" like a Zombie.

44 years ago (this month) l I got the P.A. diagnosed and was started on cyanocobalamin every four weeks.

I will be 75 next month so I guess the injections must be working and I hope you can get both answers and treatment for why you are feeling so ill.

I wish you well for the future

[Ithinkimdying in reply to clivealive]

Yes i was diagnosed with b12 anemia. Also had mma and homocyestine done. Im on my 23 shot today i did everyday for 18 days now i do every othet day. (Did yesterday and today so two days in a row) and thanks for the info ill message them and see. It would be nice if in the states they toom this more seriously. No one i know even knows about PA. i haven't had the IF test done yet.

[wedgewood in reply to Ithinkimdying]

The I F test can be negative, but you can still have PA ! This is what happened to the founder of the society.

[Ithinkimdying in reply to wedgewood]

I know which is sad! But id really like to know if i do or dont have PA :(... I think it seems to me like you can kind of tell by peoples past history who has it and who doesnt. But unless a test says it a doctor wont write it down =[

[wedgewood in reply to Ithinkimdying]

I see that Clivealive has anwered you already I think that the telephone is only manned in the mornings The code is 0044 then you dail the number leaving off the first zero. . You could e-mail initially as phoning might be expensive --- [e-mail]-----

I found that I had to treat myself,as there is not good understanding in the U,K about P.A. My tummy problems were sorted by taking a very good probiotic and eating a few spoonfuls of RAW ORGANIC sauerkraut everyday. (You can make this yourself) I inject myself into the muscle of my thigh. With either Hydroxocobalamin or Methylcobalamin. I have to get this from Germany. You can join the society fot £20 for lifetime.

Dear ithinkimdying, do not give up hope! you will always find some help here . My very best wishes.

[Ithinkimdying in reply to wedgewood]

I joined the pas a few days ago. I do have my husband inject me in arms. I did 18 days of loading now every other day. So 23 shots total. I buy cyano which is what they use here in thw states. I buy mine from canada. Im trying my very best here! (:

[wedgewood in reply to Ithinkimdying]

Don't forget to have plenty of folate too, as B12 and B9(folate) work together . I have never injected CYNOCOBALAMIN It is not used in the UK. Hydroxocobalamin is used in the UK in the health service. Methylcobalamin is considered to be closer to being absorbed. It is obtainable in the USA, but is very expensive. I obtained my first supply of methyl from the states, but it was prohibitably expensive, and I was able to find a cheaper source. I do hope to hear that you have made a little progress soon. Keep chatting to us. With my best wishes.

[Ithinkimdying in reply to wedgewood]

The cyano seems to help me so far im not as tired. i use to have to nap every single day. Now im not having to do that. I do take cofactors folic acid 5mg/b complex 50mg on 4months then off 4months. Magnesium glycinate/omega 3's and spatone iron+vit c right now.

[wedgewood in reply to Ithinkimdying]

You are doing everything right . If you have had Symptoms for a long time,it Will take a some Time to get rid of them. Some might remain i have feet that burn incessantly . ( not hot to the touch. )

[Ithinkimdying in reply to wedgewood]

I've been symptomatic for about 9years. I always took naps (if you consider 4hr sleep during the day a nap). No one ever took me seriously until i couldn't feel my face and hands lol.

[wedgewood in reply to Ithinkimdying]

That's an awful long rime to be feeling unwell ,and not know the reason why. But you must feel more optimistic now that you are getting the right treatment. Best wishes

[_tracy_ in reply to Ithinkimdying]

Hi, I'm also in the US. You're absolutely correct that they don't take PA seriously here. My doctors think that a monthly shot is sufficient. But it's not enough for me, after a few days symptoms return. I buy my cyano and needles from Canada too.

Right now I'm battling lower back issues that seem to resurface if I don't get enough B12. My feet swell, turn very red, and are painful to walk on so I have to sit or lie down most of my day. Sitting a lot is very very bad for my back.

I also have diarrhea and stomach problems, along with being very sensitive to heat. I feel like I'm getting heat exhaustion if I'm in a 75 F location for very long.

[Ithinkimdying in reply to _tracy_]

I suffer from constipation more than D. I do every other dat injects it seems to help for the most part. My worst thing is breathing. It was ok today tho! My neurologist wanted 1 x a week for 4 weeks then 1 a month for 3 months then was cutting me off.

[Ithinkimdying in reply to _tracy_]

_tracy_ is the feet swelling related? Back might be due to sub acute degeneration of the spinal cord which is common in low b12 and PA. 100% sure i have it but wasnt given a spinal mri

[_tracy_ in reply to Ithinkimdying]

I'm pretty sure most of my problems, including my feet, are PA related. Technically it's called erythromelalgia (EM), caused by overdilating of blood vessels in my feet. It's the autonomic nerves that control blood vessels and regulate body temperature. Appears the PA attacked my autonomic nerves but left my central nervous system alone as I've never had balance problems and my memory is still pretty good.

I had some back trouble (lumbar disc bulge) in 2012. Had spinal MRIs then, and again in 2014 after PA diagnosis and more back pain (found 2 more bulging discs). My HMO swears up and down I don't have SACDS. But I wonder. It does seem like PA and back trouble go hand in hand.

At times I experience orthostatic issues, like dizziness and tachycardia, which I think is related to my EM. I have an appointment in late August to see an autonomic specialist at Stanford.

[deniseinmilden]

I need 1.5 mg in 1 ml plus lots of cofactors every day...

Don't despair - it takes time to find what suits you best.

Go for it! x

[ndodge]

Calcium and magnesium help muscles to function properly. It's magnesium that help muscles relax. Did research on magnesium recently.

Good luck!

[daisymorris]

Have you had you vit D levels checked?

[Ithinkimdying in reply to daisymorris]

I did but of course my gp did the wrong vit d test. Or so im told