Friday, October 22, 2004
More tid bits for the readers with MS or fearing MS
my answer to an e-mail...without the names of course.


The quote was in the body of the letter this lovely soul e-mailed to me (s/he is facing a possible confirmation of MS):

"I'm admittedly scared but I will be most relieved to at least know what is wrong with me."


Well hello and please know that I will have you in my prayers and thoughts. My particular journey has been a bit different than yours in that I first went to the doctor in July 97 because my feet and hands had that "asleep" feeling all the time. (Numb, tingly and painful) At that point I was sent for an MRI to rule out a brain tumor or MS....and the good news is I only had a benign brain tumor that had to be removed. I spent the next 6 years attributting ALL my symptoms to the brain tumor/surgery. I had MRI's every year up until 2001 when I decided I was invincable. Then in 2003 I finally decided that my tumor had to have finally grown back (which I was promised it would) because my face was numb. I went to the neurologist kicking and screaming and this new man mentioned MS again. I said no, it's the tumor. LOL
Well he was a stubborn one and did a head AND neck MRI which is where I actually had active lesions. He also did the spinal tap and I must tell you that I was sooooooo frightened. And, needlessly so. The doctor will scrub your back, give you a shot that WILL numb your back and then do the punture. It really is one of those test where you just feel pressure and nothing else...if you get too worked up over things like this ask for a valium to take before the tap. (Also if you dislike small, confined, coffin like spaces ask for a valuim for the MRI too.) After the spinal tap it is very, very important that you lie flat on your back for a full 48 hours as the punture in your spinal cord leaks a little and can cause the worst headache you may ever have if you do not lay down.
I hope you don't have MS but if you do it is not the end of the world. Life goes on and other things WILL become more important to you. Ordinary things will occupy your thoughts and it is not a death sentence for the largest percentage of people. Only 25% of people with MS are confined to a chair and what does that mean???? The other 75% are roaming around FREE.

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Real integrity is doing the right thing, knowing that nobody's going to know whether you did it or not.

- Oprah Winfrey

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When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left and I could say, "I used everything that you gave me."

- Erma Bombeck





ckays1967 at 11:15:00 PM PDT Link to this entry

This entry has 3 comments: (Add your own)
I have progress, or is de-gressed, to Secondary Progressive. I have leaned many tips on dealing with MS and have shared them with others. It is nice to see a Blog for other MSers. I created a Blog; however, shut it down due to no hits by others. Funny how a lot of MSers don't want to help themselves.
Comment from wajaandms - 11/10/04 5:18 AM



Your journal is helping so many people, including me. I've learned so much about MS because of your willingness to share your experience with it. That has helped me answer questions about MS. thanks, hon. *Barb*
Comment from barbpinion - 10/23/04 7:51 AM



When first DX’d nearly 20 yrs ago, Patti for whatever reason DID NOT heed the warning you advised to “not move” following spinal tap testing. She did indeed suffer. … The other related memory of that distant time, was how back then we had to pay for MRI ‘out of pocket’, because MRI testing was only considered acceptable as a diagnostic tool for MS if hospitalized during an active exacerbation.
Patrick http://journals.aol.com/daddyleer/CaregivinglyYours/

Comment from daddyleer - 10/23/04 5:31 AM