On the road to recovery, finally!

[topazrat]

After a long fight to get my doctor to see that I am not a neurotic 'stressed and depressed' woman, but that I am actually physically ill, I though that a positive IF and parietal cell result would be the start of a course of injections to start me on the road to recovery.

I was wrong. My doctor gave me one B12 injection and told me to come back every three months for another.

I made many appointments, pleaded, showed guidelines, pointed out my neurological symptoms, but it all fell on deaf ears. Instead of treating my symptoms, the serum B12 of 250 was the only thing that they could see – I didn't need aggressive treatment, I wouldn't get symptoms with a level like that!

I felt lost, abandoned and felt awful, both physically and emotionally.

I realised that the only way that I was going to feel better was to inject myself, so I bit the bullet and bought some supplies and ampoules.

I've been looking at those little vials for a week, trying to summon up the courage. This morning, I did my first jab. It wasn't nearly as bad as I expected, in fact I barely felt it.

I just want to say thank you to this forum for giving me the courage to treat myself. I would much rather that it was in my doctor's surgery, but it is obvious that that will not happen.

I just wish that doctors would open their eyes to P.A and give people the proper treatment, follow the guidelines and not leave them in limbo, feeling ill, until their next 3 monthly jab, or even worse, not let them have the jabs at all.

I hate to think of those thousands of people who are dragging themselves through their lives, either untreated or inadequately treated through the ignorance of doctors.

I'm sorry for the long post but I just felt that I needed to say it, to get out the frustrations of the last years, and to clear the way to a better future.

Forum members, I salute you, today and always.

[fbirder]

It's so annoying. You are positive for anti-IF antibodies. A sure-fire gold-plated indication of Pernicious Anaemia. The BNF says you need injections every two or three months - for ever.

[clivealive Forum Support]

Well done topazrat for "biting the bullet" and just think your doctor swore an oath to "do no harm" ----- perhaps should be changed to "do no good"

[wedgewood in reply to clivealive]

Doctors are no longer obliged to swear the Hypocratic Oath .

[clivealive Forum Support in reply to wedgewood]

Oh dear wedgewood that must be why they can act irresponsibly sometimes then

[wedgewood]

I don't want to believe that , but when you read some of the stories on this forum, you do have your doubts . It is shocking how some people are treated . Thank goodness for Martyn, and people like you and our administrators , who give their time so readily . Thank you all .

[deniseinmilden]

Brilliant! Very well done! Congratulations and welcome to a new future!

Please make sure you get enough of the supporting supplements that are required to make the extra B12 work properly: a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium, maybe iron.

Well done and thank you for your post.

[topazrat in reply to deniseinmilden]

Yes, I'm taking a broad spectrum supplement. The problem I have at the moment is that for 24 hours after both the jabs I've had, I've had the headache from hell and feeling and being sick. I don't know if that's just healing or a reaction to the jab! It's a bit disheartening.

[deniseinmilden in reply to topazrat]

Hi! Sorry for the delay in replying - I too have a headache today but mine's because I've overdone doing things (celebrate that I now can!). I have heard of this reaction before and I think others have found taking a different type of B12 is the answer. I'm sure occasionally some people do well on cyanocobalamin instead.

I suggest you post it as a headline question on here or try the Facebook PA/B12DSUPPORTGROUP which has over 12,000 members: people there will be able to help.

I hope you get a solution soon.

Do you take a source of folate?

[topazrat in reply to deniseinmilden]

Yes, I'm taking a folate supplement and my blood tests showed high levels before I started the jabs. When I go back to the Doc, I'll tell them about the headaches and suggest a different form of B12, but as they are about as uesful as a chocolate teapot, I don't think that they will help much.

[deniseinmilden in reply to topazrat]

I expect you'll have to source your own. See clivealive 's posts - he might be able to help.

[topazrat in reply to deniseinmilden]

Yep, I suspect it will be DIY all the way. I shall stalk clivealive then

[topazrat]

I had a headache after the jab that I had at the Dr's surgery too. I jabbed yesterday morning and the headache is easing now and the nausea has gone. (I always feel sick when I get a headache) I feel shattered today, but if history repeats, I should feel a lot better tomorrow. I hope that your head gets better soon too.

[Ruthi]

Well done you! I'm needle phobic, so very glad I don't actually have PA!

You could of course demand a referral to a Haematologist.

[topazrat in reply to Ruthi]

I think it would be a long hard fight to get a referral. It's taken years of demanding tests to get this far! Even though I'm entitled to ask for a referral, getting them to do it is a whole different ball game. Honestly, I'd change G.P. if I thought that any other local ones would be better. I've looked at the reviews and they all seem equally bad!

[Marymary7 in reply to topazrat]

My brother gets on better with the Methylcobalamin, the most converted form. Dr. C says that the byproducts of this healing cause the headache and this symptom has eased for my brother so good luck it will in you too I hope.

[Ctadds1]

This is a old old post but I am wondering if you have made a full recovery

[topazrat in reply to Ctadds1]

I still have the odd bad day, but generally things are much better. I can walk four miles to pick up my 2 year old Grandbaby and look after her for the day, without feeling bad the next day, which is a huge thing for me - which is good, as I have her two days running this week 😀

[Cobalt1312 in reply to topazrat]

topazrat, my hat goes off to you for your INCREDIBLE bravery and resilience.

I don't think someone who hasn't experienced the long, slow, 'inexplicable' decline of health related to B12 issues can appreciate the terror and trauma that go along with it. That still does NOT make it in any way ok how you have been treated.

As if it wasn't bad enough to feel our health slowly slipping away, being met with the disbelief and doubt can just absolutely crush us.

YOU are the expert on YOU. YOU MATTER!!!

❤️

**I just realized the original post was 6 years ago (blushes heavily and sighs thinking about lack of attention to detail) though I still mean what I said before knowing it was old!

I am thrilled to hear how much better you are doing!! Cheers!!

[Ctadds1 in reply to topazrat]

Thank you so much for the reply and I am so happy to hear you are doing well!! Do you still SI and if so how frequently? I enjoying being able to interact with people who have been recovering for some time. It helps me understand that this is a long road to recovery and that there are so many success stories out there just like you!

[topazrat in reply to Ctadds1]

I'm injecting weekly. I needed to inject every other day for a while after having Covid, as it seemed to deplete my B12, but after a few weeks, I was back on weekly again. Must dash, as I'm off to pick up my Granddaughter. Its going to be a hot walk, and even hotter when I drop her back of this evening ☀️