perniceous aenemia

[gloria jean]

although having the regular B12 jabs still feel awful . anyone else have this medical problem and if so how do you feel generally - day to day -

[Scragend]

Hi Gloria -

I have pernicious anaemia - only diagnosed in May this year after a long time in hospital and lots of brain scans, lumbar punctures etc.! I can honestly say that as far as conditions go, we are pretty lucky to have something which can be controlled by a substance with no side effects and which isn't harmful to your body.

My doctor thought it was PA at first, so I was put on monthly injections, but my health deteriorated very quickly, which is how I ended up in hospital. I have been having loading doses, every week and now every fortnight, so I am definitely improving.

Day to day it seems to vary depending on how busy I am. I try not to overdo things, as I get my symptoms stronger then (tingling face, weakness in R side, sore tingling tongue, funny taste in my mouth, what I call "egg eye" haha - feels like my eyeball is a hard boiled cold egg, severe fatigue etc). Nearing the time of my injection it gets worse. I ahve some nerve damage which I think is always going to be there, particularly a twitching thumb and the sensation of cold water running into my palm, but both are easy to live with.

I just feel lucky that it wasn't anything more sinister! What are your symptoms and how do you feel? I've never spoken to another PA sufferer, hence the MASSIVE post! haha. Is your digestion OK? I find I have less appetite when I'm 'pernicious', and I make up for it just after my injection! But bowels are either extreme one way or another, if you see what I mean!!

I don't really mind the injections, they hurt but they make my life so much better xx

[gloria jean]

many thanks for your reply - sorry to hear it took so long for a diagnosis - i have had this about 8 years i guess now. I just feel so lethargic at times and also quite depressed and unmotivated ( that may not be linked) generally though it is the bowels as you state! also appear to other people as clumsy but it is my balance - walk almost as drunk ( although i am not ) dont know if you have this bother but I also seem to take a long time in analysing peoples conversation ( almost like you would say .. it goes over my head - almost like i hear but the brain isnt absorbing the words - my other half accuses me of not listening .. oh and i seem to have a bad memory too ! )
thanks so much for coming back to me - nice to "talk" with someone in the same boat .. moral support i suppose. By the way i am 59 years of age .

[Scragend]

Hiya Gloria - sorry to hear it's been so difficult for you. Sometimes I find it hard to tell which symptoms are PA and which are just me!! I went for a hearing test a few years ago because I couldn't follow what people were saying. I find it particularly hard at parties or where there is a lot going on (but I think I have always had a bit of a problem with this, and I always put it down to the fact my mind is too active!) - I can't read books either without reading the same line over and over again, before falling asleep!

I had a lot of balance trouble when i was at my worst, if I'm run down everything is bad again. How often do you have your injection? Is it 3 monthly? I have heard a lot of people saying they can't last that long, I certainly couldn't! A lot of doctors are getting more sympathetic to it and are more prepared to give them as you need them - I have been SO lucky with my surgery, because they are expecting me to be on monthly injections as a matter of course. I got so ill when I hadn't had an injection for three months, I never want to go back to that again.

I am 32, I think that's why they did such exhaustive tests, I had stroke-like symptoms so they were concerned.

Presumably you have come across the pernicious anaemia society? They have a good forum. There is a lot I am still trying to understand - people seem to say that you should take folate supplement but my doctor hadn't heard of that.

How do you respond to your injection? I get a nasty taste in my mouth the first day, but I am bounding about by the next. I'm much more able to think straight and take stuff in for a week or so, then my symptoms begin to return.

Are you able to sleep well? When I was first diagnosed I was obsessed with PA, it was so grim, I couldn't imagine living llike this forever, but I have learnt to get on with it better now, and it has done me a service really as I now know what I'm capable of.

[gloria jean]

hi there again - i actually have my jabs every 10 weeks now (after insisting on further blood tests !) Actually i dont sleep well - keep going really hot then cols - regardless of weather. do you want my e-mail address to communicate on as this site is public ? how do i find the site you are saying has a good forum - regards gloria

[Jugglering]

Hi Gloria... I too have PA.. jabs every 10 weeks (I had to insist on this timescale, plus the jabs as the original doctor I saw advised me to take (ie eat) some B12 vitamin tabs.... but since PA means your stomach simply cannot digest B12, what a waste of time.. hence the jabs now ! My GP also wanted me to only have one jab every 6 months... but since I found that I was exhausted after some 10 weeks, I have persuaded them to *do me* every 10 weeks. It takes about a fortnight for the levels to rise enough to make me feel ok but I certainly can feel when my levels are low... I get quite tired and sleepy - which is not much good when one has a full time, very physical job !

You might want to investigate some other meds - I take Alpha Lipoic Acid (600mg per day) and that definitely staves off the exhaustion, but it's not suitable for everyone (it's used as a diabetic treatment on the continent, so it lowers one's blood sugar, so be careful there!).

If you want to email me, just type in my username and follow it up with the normal @ then aol.com

[Scragend]

Hiya - yes, it would be good to be in touch by email, unfortunately my email address is my full name, I'm not sure how you tell people on here without everyone seeing?

The Pernicious Anaemia Society is brilliant, full of very knowledgeable people who are happy to support and help - their address is:

http://www.pernicious-anaemia-society.org/Home _Page.html

Have a look on there, it's good when you're feeling low.

Juggerling, do you mind me asking how old you are? Just wondering how long you've been on B12 and how you are getting on with the 10 week injections?

I was working full time, sometimes 6 even 7 days a week, but I got iller and iller, and it has led me to go freelance, I occasionally do a day's work in the office for them and I feel seriously tired and have nerve symptoms in the evening from the continued concentration. Personally I find it a lot easier to follow what my body dictates nowadays rather than trying to force it into working office hours, and I don't even care that I'm earning less than half as much! I think that's the PA *brain fog* speaking!!