After a lot of begging, I’ve finally got a diagnosis of pernicious anaemia and a repeat prescription is being written for my injections. Hopefully this is the reason for all my symptoms!! The LP was negative, so most definitely not ms. Still not MRI results, but will probably be clear. I will stick around for a bit until I’ve got MRI results Hopefully the damage hasn’t been too great and I can make a full recovery Good luck to everyone
Good luck with MRI results Kisywisy, let us know when you get them.
Hopefully when you start the B12 injections you will feel better with your symptoms
xx
I really hope so!! I’m only getting weekly injections for the first five week them every three months but people have been saying because of my neuro symptoms I should be getting them daily/every two days to start with?? Quite sad there seems to be a lack of knowledge with gps on the subject. Oh well, hopefully I will be on the mend anyway
Hi Kisywisy,
I may also have B12 issues. I have an mcv of 110, so the neuro has said I should receive supplements to see if that settles my problems. Curious as to what level your B12 was at for you to receive injections. My B12 was only low normal (210) so at present I’m only being given oral supplements.
Astro x
My initial level 148 then went up to 157 after 5 weeks of large oral b12 doses. Gp said the low normal range was 190-900. He thinks after the 5 weeks of loading injection my level will be around 1500. Spoken to my sister who is going to be tested. She has so many symptoms and her confit ice fuctiom has been slowly going downhill for years. Looking back at our mum, gran and brothers, we’ve probably all got it. Symptoms going back to when we were children as well. I’m going to insist my kids are tested as well as they have issues ranging from concentration to developmental delays. Begs the question, how can something like this be missed/misdiagnosed for so long??
*cognitive function, not the nonsense I wrote above
Thanks for the feedback, Kiswisy.
I’m taking megadoses anyway so that even if I have any absorption problem, some of it should at least get through. I’m moving soon so will need to hook up with a new neuro when I get there, and by that time the 3 months of supplements will have finished. I agree with the GPs not knowing very much. I’ve read a whole book on B12 deficiency and it’s so frustrating when you talk to them and you really understand that they don’t have a clue.
I’m still not sure that B12 is the underlying problem, because the paresthesia and food intolerances began before my mcv started increasing. Still, the B12 issue does need looking at.
Good luck with your treatment.
Astro x
Good luck!! You say food intolerances, have you thought of coeliac disease?? That also messes up with b12 absorption.
Yes, I have thought about it, but not been tested for it yet. Earlier this year I did try going back on gluten to see if I got any worse, and I did (mainly in the form of more numbness, including frequent complete numbness of my left leg at night-time). Needless to say, I cut it out again pretty quickly.
But after a while you understand that many nervous conditions can be affected by food, whether it’s MS, peripheral neuropathy or anything else. So I’m letting the diagnosis path play out, and I’ll see what comes out of it. Guess you have to learn to be patient.
All the best
Astro x
That sounds like very encouraging news - pernicious anaemia can be managed perfectly well, and it would be great if correcting your low B12 levels resolved your neurological problems. What a good thing that you have found out about it! - untreated, it can be a very dangerous condition.
I don’t have pernicious anaemia, but have low B12 (as do many people on here, as you know) and am on 3-monthly injections and have been for years.
Good luck.
Alison