Life with MS & EDS

December 5, 2008

Finding things online and the questions they raise

Filed under: Uncategorized — by mseds @ 2:36 pm
Tags: , , , ,

Things are going well. I had a blood test to make sure this isn’t Lyme Disease and am still waiting for the results. I doubt the test will show anything, but that would be an interesting explanation for this.

A friend shared an old article by someone who had just been diagnosed with MS. It was back in 2001, so some things have changed. Parts of it were funny, so I thought I’d share. My experiences have been pretty different than the author’s. I only cried once (just after the MRI results came in). I don’t feel scared or depressed. I do worry a little whenever my feet or arms get that pins-and-needles feeling, but if you know how I sit, it’s probably caused by the normal reasons limbs “fall asleep” and I just need to uncross my legs or stop leaning on my arm in a certain way and things return to normal. I’m actually pretty optimistic that whatever drug I pick will help.

The thing that jumped out in this article is that she says, “There are some things I can’t do. Ever. Give blood and donate my organs. I try not to take it personally that no one wants that stuff anymore.” I’ve always been an organ donor and really believe it in. I’ve never donated blood because I tend to black out when giving my own blood for tests (rather low blood pressure will do that!) Does anyone know if people with MS can’t donate organs? I can’t locate anything about that online and wondered how accurate that was.

The other thing is that she cautions about what you read online. Yes, I think there’s a lot of negative and inaccurate stuff out there, but there are an increasing number of positive, well informed posts and for those I am grateful. I think it’s a matter of picking and choosing what you read, just like anything else online. Some of it is garbage and some of it is very worthwhile. I’ve found worthwhile sites, but am still searching for more good information from people with a positive attitude who seem well informed and I always try to validate “facts” before believing them.

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Update: I called the neuro’s office and am still waiting to hear back from them about the blood test results. I’m taking this as a sign that there’s nothing to report. The trend the past few weeks has been that doctors themselves call first thing in the morning when results show something.

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1 Comment »

  1. Organ donation for MS patients isn’t an option as far as I know. There have been cases of transmitting MS through bone marrow donation, and therefore the rest of the organs are out as well, on the off chance that you’d carry along some immune cells that would start attacking the recipient’s myelin and trigger the MS cycle starting there as well.

    I was really rather upset by that myself. I’d donated blood and platelets before my diagnosis, and I was sorry to have to give that up. I may donate my body to science instead, since I’d like to be of use and I have objections to the funeral industry, but that’s a pretty morbid topic overall.

    I’m glad you liked the article. After I sent you the link I googled the author to see that she’s still working and, one hopes, doing well, which is a good thing to see.

    Comment by Abigail — December 6, 2008 @ 11:36 am


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