A good idea gone bad - donating blood?

[Lulu54]

On an impulse yesterday I donated blood as part of the Extreme Makeover home Edition going on in my neighborhood.  I felt fine until about 4 hours later.

Then it was all I could do to function.  We had gone to dinner at a friend's house and I had to get home.  When I came in I turned on the computer to check in here.  I managed to read the swirling controversy but before I could reply I either 1) fell asleep or 2) passed out.

I had no warning that I was going off into someplace else.  When I woke almost three hours later, I was holding my laptop computer.  Last night  and again today, it feels like I have been drinking heavily, with my internal body being rather shakey.  But i don't have a headache and I definitely had nothing to drink besides water all day.  



And yes, the blood bank folks had my complete med history and they rules have been revised so MS patients can donate as long as they are ambulatory.

I'm wondering if perhaps the blood donation set off some strange MS reaction - anyone out there with a clue?

be well,
Lulu

[LinD7]

One needs to be fully hydrated before and after blood donation; also need a good meal beforehand.

Too much iron (aka iron overload) is the cause of so many health conditions.

[cjldb]

We had a blood drive at the school where I teach a couple of months ago and I asked about donating and they said that some places allow MSers to donate but they did not. She said it was more about protecting the MS patient than anything else. She said that when you donate your hemoglobin will drop one full point and they didn't feel it was worth it to the MS patient to weaken them in any way.

[SarahL2491]

Interesting!
I am going to a Tysabri program/supper in 2 weeks and will definitely ask the drug rep about this!  Am interested in what they have to say.  I have not given blood but now am curious!

[Sidesteps]

Is this possibly due to blood sugar's or a BP drop? It sounds a lot like how I feel when my sugar levels drop or BP.

I'd be curious... if there is research on this.

[Valkyrie568]

I am in Limboland, but I have had a similar blood donation experience.  I felt fine while they were taking the blood and afterwards sitting at the juice and cookie table felt fine, too. But I gracefully folded myself forward in my chair and passed out w/o falling out of my chair. I was with my grandmother and she had to drive us home, in my classic corvette and she hadn't driven anything w/ a standard transmission since the 50's! She was such a drama queen that I got the giggles even thru feeling awful and being very worried about my car.

It took me days to feel normal and years to make another attempt at giving blood, but I've not had another problem. I've always thought I must have had a bit of an infection or virus that I wasn't aware of at the time. I hope you feel better soon!

[sarah343]

I'm 16 and have MS...I was wondering abut giving blood when I saw a BloodMobile at walmart. I went to ask them if I could donate and got turned down due to my ms. Now I'm not sure if I want to..

[Mand125]

Some years ago my daughter was donating blood, it was before her MS diagnosis but soon after I was dx, I asked her to check for me whether I would still be able to donate - I had done so regularly for about 25 years before that.

The lady (nurse I think?) she spoke to said that while I would be allowed to donate she certainly wouldn't recommend it as she thought it "wouldn't do me any good at all".

I haven't donated since I was dx because of that.

Mand

[MsWobbles]

You were so kind to want to donate even with your MS symptoms.  I am sorry you had a bad reaction afterward!  

I had signed up to give blood a couple of years ago, but then had to cancel the pledge because I felt so weak that I knew that I would need every drop of blood I currently had just to maintain my current state of weakness and not become even weaker.

Please listen to your own body and experience and don't give any more blood despite what the medical "authorities" might say!  I have come to learn (the hard way) that today's medical authorities often aren't authorities at all!  One day they say something is fine and the next they retract the statement and take an opposing position. Just consider their previous position on postmenopausal woman and estrogen supplementation.  They really just don't know all that we (and they) think they do.  

I think Charlie123 has a point:  It may be that any intervention might trigger a relapse or bad symptoms in a person with MS. That has been his experience as a person diagnosed wtih MS. That is also true of people with ALS as well as bipolars:  Any surgery etc. can cause a bad reaction or worsening of condition.

So, please, be careful.  Donate money or time, not blood!!

WAF

[goofysmom1]

Amazing how our bodies (don't) cope with things huh!  :)

Hope you are feeling better now.

Hugs,
Chrisy

[Lulu54]

Chrisy,
It may have been the baclofen that I just started this week and/or good old fashioned tiredness.  

my best,
L

[goofysmom1]

Well that is good to know.  Did either the nurse or neuro have any thoughts on what may have caused such a strong reaction?

Hugs,
Chrisy

[Lulu54]

I really must make sure that I have the official record here - there is absolutely no connection between my exhaustion Saturday night and the fact I donated blood earlier in the day to the blood drive.

I asked that question on the MS nurse at my neuro's office and she emphatically said it was not a problem.

Then a short bit later I asked my neuro himself the same question and got the same answer.  He said that there was no way that donating blood affects the course of MS.

So there we have it folks - next time you want to do so, you are cleared to donate.  The Red Cross will take our blood and the doctor says its ok!

My best,
Lulu

[Charley123]

I'm beginning to think that any procedure has the potential to set off MS attacks.  I have had a lot of blood drawn lately, but not as much as you, and have felt very weak and light headed for a few days afterwards.  I also had a bad spell after the conlonoscopy I had in April.  It was right after the colonoscopy that my sed rate went up to 129 and I now have polymyalgia rheumatica, giant cell arteritis and possible fibromyalgia-on top of MS.  I've been on prednisone for 4 weeks and while some of the inflammation seems to be getting better, the MS symptoms (heat related, balance etc.) are worse than they were during hottest days last summer.  The timing may be coincidental.  
I don't really know. But, I do like your question as I've had the same one for a number of years. Charley

[Sarahsmom46]

How bizarre.  I'm so sorry that happened to you as your intentions were good.  You think your body would have cut you some slack.

I agree with whoever said it probably has a lot to do with starting the baclofen. Donating the blood probaly didn't help either.   Baclofen is a poten drug especially in the beginning.  What is the dose you are titrating up to?  

Let us know what the nurses advise. It will be helpful for us all to learn the do's and don'ts.  

Julie

[Lulu54]

yes, I started the baclofen and have been adding doses - I am now at 3 times a day with 1/2 a pill - 15mg total right now. maybe that's it - I would be more than happy to bonk off!

L

[sllowe]

Lu - did you start that baclofen too?

If so, could have been a contributor. Even through titration, I was able to bonk off at anytime of the day.  

[Lulu54]

hey Dj, they changed the American Red Cross rules two years ago about MS patients donating.I was surprised that even with the dmd's I could donate.

Karen, drinking lots of fluids sure complicates the ongoing bladder fun but I'm trying!!!  :-)

L

[Karen99]

How bizarre was that?  Just when you think things couldn't get an weirder.  

Drink plenty of fluids today.  Take good care of yourself.

[ShadowsSister]

Hi it just me again, you said they told you the rules reguarding Those with MS was changed? I was told several years ago I couldn't donate blood because of the MS and my medications at that time?
I am so glad you are seeing your Nuro tomorrow. Please try to rest today and keep your feet up... I am so sorry this happened to you. I know how wise you are and that means you won't be running any races today or tomorrow.. Try to stay relaxed and cool
Love & Prayers are being sent & said..{{{~!~}}}

[goofysmom1]

I am so sorry you had such a reaction!  I hope you are feeling better today.  Giving blood is such a wonderful gift - but only if we can do it without feeling sick afterwords.

I will be curious to hear what the nurses say about it and if your reaction was related to MS.

Hope you feel better!

Hugs,
Chrisy

[Lulu54]

thanks,
the only thing I can think of is my body was reacting to the trauma of losing blood - and I will be at the neuro's office tomorrow so i will run this by the nurses there.

It was very odd when I woke last night - usually if I'm going to nod off, I know it and do put the computer aside.  :-)

I'm taking it easy today,
L

[luverofrogs]

(((((((((((LuLu)))))))))))))))  I cannot donate blood because my veins are too small, so I don't have any experience with this.  It sounds very scary though.  Take it easy and be careful.

[Deb61]

After reading your post, I felt a need to immediately respond.  Yes, I had a really bad experience giving blood.  Many years ago I decided to give blood.  I was the correct weight, ate, and was young.  However, toward the end of the blood donation, I went into grand-mal seizures for several minutes.  During that period of time, I had no idea what was going--that period of time was completely black.  There was no vague memory of anyone talking to me or trying to get me out of it or dreams.  It was like that period of time was completely missing.  

Looking back, I wonder if I had MS back then.  I think there is a biological explanation (not sure how).  I think the nerves misfire when a trigger, like brain damage or MS, when something triggers it.  How scary!  As a result, I will never give blood again.  I was really bad off the next day.  It took a couple of days before I was back on my feet again.  

Take care of yourself and avoid the heat today.  You may want to call your doctor as well about this episode just to see if you're okay.

Deb