Self Injecting.

[JanetteWebster]

Hi all. I just wanted to pop on here quickly to thank everyone for their continued support. Without you. I would not be writing this today. Today was a milestone. After 16 months of going through what most of us with B12 deficiency go through I seen my GP today and he listened.

My initial B12 back then was 98 and despite the fact that my last test was 700 he still listened as I explained that I still have a weak bladder, pins and needles and five days after my injection have the usual wide range of symptoms return from breathlessness to cognitive and fatigue. I explained that I took sublingual B12 to keep me going but was concerned. I told him how I had met with Martyn's Hooper back in December and could not thank him enough. The work that he does is amazing.

He prescribed weekly injections that I can self administer. We go back on Weds for him to show my husband how to do it.

I am sharing this not to brag or shove it in people's face but to point out don't give up. Have hope and perseverance. I have seen so many doctors that I have lost count but kept going until one would listen.

I hope and believe that soon B12 will be recognised by GPs and treated properly and we have to keep telling them and not loose hope. Only you know exactly how you feel. They have to listen to our symptoms and not our levels. I wish you all well and hope that you can get the treatment that we so desperately need. Xxxx

[Lisahelen]

Its good to hear at least there are some who do in fact get the treatment they should in all honesty expect from the medical profession.

[JanetteWebster in reply to Lisahelen]

Yes your right but it's so wrong that it's a rare occurrence isn't it. It really saddens me (as I know it does others) that this condition is so badly perceived within the medical profession. Xx

[fbirder in reply to JanetteWebster]

Small steps. It's great that you have a sensible GP. They certainly seem to be getting more common.

I gave my GP a copy of Martyn's book (signed) which he read between appointments and is sharing with the rest of the practice. I'm hoping that all the doctors there will become evangelists for abandoning old ideas.

[JanetteWebster in reply to fbirder]

That's a really great idea :). Yep small steps get there eventually but it's so sad that there is damage caused along the way isn't it. I hope that weekly will make a difference. He did laugh when I tried to push my luck and said twice a week. Slow down now he said lol xx

[wedgewood]

Great to hear of your success ! You have an exceptional G.P. I have met with nothing but a brick wall from mine. (One injection per 3 months, irrespective of how one feels) I have managed to get rid of my numb feet! --So I just self-inject and stay well!

[JanetteWebster in reply to wedgewood]

Yes. I thoroughly appreciate that I am very lucky. it really is luck of the drawer isn't it. Sad but true :(. It's awful that you have had to take things in to your own hands and I can totally understand why you would. Today was my last go at the last GP and I just got lucky. I would deff be on the self medicating route other wise. Can I ask you. How long did it take for your feet to feel less numb and how often do you inject? Many thanks.

[clivealive Forum Support in reply to wedgewood]

I too had a "one size fits all" and "you must do what it says on the "tin"" type GP until I joined the PAS and learned more than he did about P.A.

He has now changed my cyanocobalamin prescription from "every four weeks" to "use as directed" which in other words means "when I feel the need"

[wedgewood in reply to clivealive]

Well, I'm really pleased that some GPs are seeing the light. The ones in my practice don't. I shouldn't have told them that I self-inject to keep well.Lots of self-injectors don't, which leads GPs to think that one injection every 3 months is OK. I don't go to the surgery any more for B12 injections. I know I'm marked out as being a member of the awkward squad. So many doctors are arrogant and are furious when challenged. But I am really hopeful that the medical profession will eventually find out the facts about P.A. It is a very complicated condition with so very many symptoms. We are so in debt to Martyn Hooper for founding this Society. I think that he is a hero!

[JanetteWebster in reply to wedgewood]

Yes. I couldn't agree more. It was defiantly because I explained that I had been to the PA society and literally regergetated what Martyn had told me and what I had read from his book. The guy is amazing. My GP said well if that's what he recommends then it can't do any harm. He said that he will be speaking to the rest of the practice but does not believe that they will agree with his decision and may try to object. He said if they do to just keep making appointments with him and he will sort it out. Incredible eh xx

[JanetteWebster in reply to clivealive]

Wow that's brilliant. So pleased for you x

[JanetteWebster in reply to JanetteWebster]

Thanks you. Hope that you are well too x

[wedgewood]

I injected methylcobalamin(in the thigh muscle) for certainly 2 months on a daily basis, then the feet started to improve . I now inject weekly. My feet are no longer numb but feel as though I am wearing shoes a size too small . But I can cope with that. I do also take a Vitamin B complex tablet .

[JanetteWebster in reply to wedgewood]

Wow. Every day. That must have been hard but brilliant that you are seeing the benefits xx

[gillsie]

Fantastic that you get such help. How i wish all PA sufferers were listened to and helped. I hope your doctor enlightens other GPs. Keep spreading the word and maybe the GPs will wake up.

[JanetteWebster in reply to gillsie]

Yes it is such a shame. The GP actually said that his partners probably won't agree with it but he was going to talk to them about it. Baby steps eh x

[Sleepybunny]

Hi JanetteWebster,

Great to hear about your positive news and your enlightened GP.

"but to point out don't give up."

I agree with this but it can be so hard to keep fighting after years even decades of illness. I sometimes feel very wistful and wonder whether I could have avoided some of the symptoms that appear to be permanent if I had received treatment sooner.

[JanetteWebster in reply to Sleepybunny]

I totally agree. As my brain is slowly getting healed and the brain fog lifts. I am getting more and more angry and disappointed with the way B12 is treated. Or rather not treated. It seems totally insane that any other vitamin deficiency and you can go and buy it yourself but not B12. Plus other EU countries you can just walk in to the pharmacy and buy it, relatively cheaply too. Yet the UK is in the EU I am baffled. Xx

[JanetteWebster]

Thanks to everyone for your replies. I hope that others are as lucky with their GP soon. I went this morning and he shown us how to inject and also agreed to twice a week. Incredible I know. It was hydroxocabalamin not sure if that's what I had but hey ho. Now I need to check if I should be taking anything else along with the Folate 400mcg. Any advice would be so appreciated. I have blood tests tomorrow so wondered if maybe I should wait for those in regards to ferritin etc xx

[Sleepybunny in reply to JanetteWebster]

Some people experience a drop in potassium levels when they first start B12 treatment. See links below.

b12deficiency.info/what-to-...

patient.info/doctor/hypokal...

[fbirder in reply to Sleepybunny]

And the recommended treatment (well, recommended by me) is bananas. Preferably in the form of a daiquiri (or that might just be me).