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A little bit heartbroken

Heartbroken is probably a little bit dramatic but I really am upset about this You’re all probably be thinking ‘you plonker, we could have told you that’. My neuro assured me I could continue donating blood, so off I trundled for my first appointment post dx, only to be turned away. I actually burst into tears there and then. I’ve been trying so hard to be positive and have slowly but surely been coming to terms with everything, but this has come as such a blow. Having gotten over my letter from the DVLA, this just comes as another reminder that I’m not good enough anymore Sorry for the miserable post, I just need to vent :frowning:

I must be a plonker then as I didn’t know we couldn’t give blood… You’re just as good as anyone else, we’re just a little bit different !!!

Hi traitsy, I know what you mean. Just when you think you are getting your head round this horrible disease, something trivial seems to come up and start you off again. I thought I had accepted my diagnosis (2005) and was coping until January this year when my neuro said I had deteriorated considerably and was now SPMS and took my off dmd’s. Anne x

i found that out the other day when i phoned to ask if i could still donate with the medication i was taking. it doesn’t mean you’re not good enough though! the nurse at the blood call centre thing told me that there has been nothing proven to say that it will cause you any harm to give blood, but on the other hand, they have to act in your best interests as they also have no proof that it won’t. the fact that you were wanting to do it when most people are too lazy to bother already makes you more than good enough! xxx

Yeah I knew we couldn’t give blood and as I am squeamish I was not that bothered until I lost a lot of blood in childbirth and required four transfusions…it was then I thought damn I wish I could and it seems unfair as given a choice of die or blood from someone with m.s I know what I’d pick?! Xxx

Aah Vicky I thought it was because our loos was poison :wink: but I suppose that kind of makes sense when you say it like that. X

Hi Tracey (it is Tracey aka Traitsy, isn’t it?)

Oh dear, what a plonker your neuro is! No, we can’t give blood, I’m afraid. Something I’d have thought he should have known. Fancy letting you trundle off there, and get turned away.

I was always too squeamish to give blood - right up until the time I’d given what felt like gallons, in the quest to find out what was wrong with me, and felt I’d finally now be OK with it. Only to find that although I’d overcome my reservations, the rules now said I couldn’t.

I believe it’s allowed in some countries. In this country, I think the official line is that it’s for our own protection, as we’re not well enough. But although MS has never been shown to be infectious, or transmitted by even the most intimate contact, I think the lingering mystery over exactly what does cause it means they’re not happy about taking the chance. You can imagine the litigation, in years to come, if there was a repeat of the HIV scandal, and it turned out groups such as haemophiliacs had gone on to have a greater risk of MS.

I’m not sure how I’d feel, if I didn’t have MS, and was faced with accepting blood from a diagnosed person. In theory it should be fine, but until we know the true causes, could we ever be really sure?

Given how long it takes most of us to be diagnosed, there must be MSers who’ve unwittingly given blood whilst still unsuspecting, and people who’ve received it… So it does seem a bit arbitrary to close the door at the point of diagnosis, when people may already have been donating for years.

If you still want to help medicine, you could consider making a gift to the MS tissue bank, after your death (I’m pretty squeamish about that, too, even though I know I won’t be around to worry about it).

Tina

x

I’ve not started dmd’s yet, so figured I’d get one last donation in before then. It’s just frustrating, I’ve been giving blood since I was 18 and I’ve had undiagnosed MS since I was 18. I’m exactly the same person I was 6 months ago at my last donation, I just have an MS label now. I’m not angry at them, just sad. I gave 17 units and would liked to have least made 20. If I hadn’t gone through a stage of tattoos and piercings I would have! My mum had two transfusions, so i deducted 10 units from my running total, so actually only 7 :-(. I’m down as an organ donor, will they still be wanted? Thank you for reading and responding. I’ll get over it I’m sure!

I was the same as you traitsy, blood donation was and is very important to me, I teach blood transfusion to nurses and medical staff, so I was very upset that I could no longer donate!

We can still be on the organ donor register for organs and tissue donation and our bits could be used to help someone, but only as a last resort, but still its something I guess.

Jools X

I was very upset when I could no longer donate blood as I felt that it was the one useful thing that I was doing.

I was angry more because someone donating blood means I get to see my little boy grow up. Wished I’d done it before diagnosis though that was in 2004. X

I donated blood about 5 times before I had any MS type symptoms as my mum’s close friend died of Hodgkin’s lymphoma and, in her last few months, was having blood transfusions every week. It made me realise how important it is to donate. However I was asked to stop donating as I was unwell every time and actually passed out the last 3 times. I think it wasn’t worth their time when it took 20 minutes, several biscuits and drinks and a few members of staff on the floor with me to bring me round !! I followed all their instructions, making sure I had eaten, wasn’t rushed or stress before donation, had drank plenty all day etc etc but nothing made a difference. I know I was possibly borderline anaemic as my blood sample used to drop so slowly in that liquid they use to test it and sometimes only just made it in time.

When I mentioned this to my MS nurse after diagnosis she said there must have been a reason why I was always so unwell and maybe it is linked to my MS which was probably brewing at the time without me realising. It does make me wonder …

Tracey x

Hi there Traits,I get your feelings, but donot like your wording,“Not good enough anymore”…You/we have experienced dramatic physical changes through no fault of ours.If the medical fraternity are unable to handle our blood and bodies with no chance of somebody sticking a needle in themselves that is not our fault.

Going back to not good enough,the way that our club members conduct themselves is awesome, considering what has happened and the way that we are left to “Get on with it”.As I get older,no wiser and see more of the way in which WE are treated or not I become more impressed with our Membership.

Tell you what,if I ever win a s-it load of money I’ll try and set up our very own MS Blood Donation Service and then we can look after ourselves.

OK,anti-vent over

Wb x <(L)>

You’re right, that wording wasn’t great. I wrote the original post while sat in a heap on the floor with very bleary eyes - not to be recommended! :slight_smile: I’ve always strangely enjoyed giving blood, got to know the team quite well. I used to see how quickly I could fill the bag and record my time for next time. I’m one of those odd people who has a slight fascination with needles and always watched intently as they did their thing Maybe I’m just bitter that I didn’t get to try the fancy new rocking bed chair thingys they now use :slight_smile: Sounds like a great idea Woblyboy, just one thing, can I drive the blood bank lorry?!

Yes

Hello there Traits,apologies for the terseness of my reply to your very reasonable request,but I got a call,nay bellow of nature.I’m thinking that your skills may be required on/in something a little brisker than a wagon.Those chair thingies will need thorough testing as well, so if you don’t mind.

As for DVLA and their games I’ve surrendered my licence after 30 years,more than half of it driving professionally,'cos if ever I thought I needed it back I could be assessed.If they’d taken it… game over.So when my balls drop we’ll get a Fire Engine, a race track,a busy little town and we could have some fun. This money is going a long way.

Wb x

Blood and organ donation were really important to me as well and I was gutted when I found out I couldn’t do either anymore.

I’ve now signed up for the MS tissue bank instead.

You can still donate organs there was a topic re this a while ago on here and someone had checked it out to find that answer. I’m donating my organs and my tissue is going to the m s tissue bank. It is annoying about the blood thing as I’m very grateful for donors…they saved my life and its a fact I wouldn’t be here watching my little boy right now without. So given the choice if that person had m.s (and I hadn’t) I would have definitely accepted the donation irrelative of them having m.s X x x

Hi, I gave up donating after 45 ‘points’ (remember the old passbook?) after fainting in the car park one time. After that, just not gave due to tattoo work (they do not like it) but gave plasma instead for a while. Knew about the not accepting now due to MS but I have a question:

I am on the Anthony Nolan Bone Marrow Donation list. Should I remove myself from this as well?

On a down note, the change in DVLA status did not upset me, it was the simple payout of the critical cover 3 months after this with no battle that did!

Vince