Breathing difficulties HELP

[Antstarr]

Hi I need some advice please,

I have never been tested for pernicious anaemia but was told by the GP I had a vitamin b12 deficiency. My symptom started as swallowing difficulties, then progressed to optic nerve swelling and severe nerve pain, I started taking hydroxocobalamin, it was helping a little with the nerve pain and swallowing but my eye issues was getting worse, I researched and found methylcobalamin was very effective for the optic nerve, after only a few days of injecting Methyl not only did my eye issues get better but my nerve pain reduced dramatically.

I have been on methyl for about 4 months now but I have noticed breathing difficulties I stated getting these symptoms before injecting but it’s the only symptom that doesn’t seem to respond to the b12. My doctor told me that some symptoms take longer then others to get better. So I have a few questions please

Should I go back to hydroxocobalamin now seeing as my eye issues are better

I have been self injecting for 6 months now, I feel like this is a long time but I keep reading that people have to inject for like 3 years, so Is this to early for me really to notice things?

Can anyone relate to breathing difficulties with there b12 struggles

Please any advice would be really helpful my gp is useless and I feel so in the dark with all of these issues 😢

Thanks

[deniseinmilden]

Have you had your iron levels checked? It's probably the most common deficiency linked to breathing difficulties and often goes with B12 deficiency.

As far as injecting goes for most of us it's for life.

Only if you happened to be deficient for a short while - before you have caused irreparable damage to your system - because of being vegan, are you possibly going to not need injections if you go back to eating healthily.

[Antstarr in reply to deniseinmilden]

Thanks for getting back to me, I did have low iron levels my doctor said iron anaemia, this was a while back I began to supplement, do you think I may need a higher iron vitamin?

[deniseinmilden in reply to Antstarr]

Quite probably. You should get your levels tested and supplement carefully with more testing though, as while it is essential that you have enough and you will feel impossibly dreadful if you don't, it is also possible to have too much which isn't great either.

Definitely worth looking into, especially with a history of it.

Good luck!

[Ritchie1268]

Most of my symptoms have gone since self injecting.

I used to get what I now know was 'Air hunger' where I'd be sat relaxing & I'd gasp for air, really strange, but this has totally disappeared now.

The only things I noticed that remained were pins & needles & burning feet, which I could live with. But after around 4 months of every other day injecting, my burning tingling feet turned painful when out walking, as if I was walking on pebbles or glass. After seeing a neurologist, my nerves seem to be damaged in my feet. I'm hoping these will heel but accept it could be some time when, or if they will.

I guess that's the strange thing about PA & living with it, just when you take a step forward, something else can appear.

Good luck

[Antstarr in reply to Ritchie1268]

Thanks for replying to my messages, i really want to be tested for PA my gp is useless he won’t do it so I’ll have to go private and pay. I feel so disheartened people don’t understand just how it effects your entire body, I have been injecting for 6 months now and I do feel better but new symptoms do occur and it worries me. I am injecting everyday I’m so scared to reduce my doses I went 3 days without it and I felt like I was dying. Doctors don’t have the knowledge to treat this I feel like I am in the dark a lot.

Can I ask how long you have had PA for? How long have you been injecting and what type of b12 do you use

Thanks

[Ritchie1268 in reply to Antstarr]

You're welcome. Yes you're right, you say to someone I have a B12 deficiency & they look at you as if to say, it's only a tiny vitamin, so what, get on with it. If only that's all it was! 🙄

It's thanks to the great people on this site that has helped me.

I was diagnosed in March I think it was last year.

My Dr said you have Macrocytic Anemia, B12 was at 124, folate deficiency & PA, was told Injections for life & that was it really. I kept a diary after the 6 loading doses did nothing for me, only seeing any improvement 2 days after first 3 monthly, but for 2 days only. Same with 2nd, same with 3rd. It wasn't till I found this place & learned I would probably need more frequently. I've been Self Injecting every other day since Xmas. I tried to leave it off a bit after I noticed improvements as I hate needles, but symptoms started to return. So I'm on every other day & think that's what I'll have to do now.

I've always used Hydroxocobalamin.

Good luck, I really hope you get sorted soon.