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Date Posted: 18:04:13 05/27/00 Sat
Author: Chloe
Subject: Re: Letters of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri


CHLOE SIMPSON

Hi, to start things off, I thought I would introduce myself and tell you all my story to date. (I apologize to
Joan who already knows all of this word for word!) For me, it all began last november when I had
intermittently blurry vision for a few minutes several times over the span of a week. It always resolved
itself, so besides thinking that it was a bit strange I did nothing about it and the thought of going to a
doctor never even entered my mind. Around the same time I developed a UTI, about which I did go to a doctor for antibiotics, but even still it failed to go away. I was on my third antibiotic for it in early December when the outer part of my left hand went numb. I thought I had probably just pinched a nerve, but it persisted and the next day my left foot had gone numb. At this point, I figured that I must have developed a reaction to the new antibiotic and hightailed it to my GP. He freaked out, seeming to think I had had a stroke, and sent me to the ER. There a neuro was called and he did a spinal tap and sent me home, but not before I heard the doctors having a long talk about me and MS outside my door. Over the course of the next two months, I went on to have NCS/EMG, a full-spinal mri, and blood-work for everything under the sun. To date, everything has been normal. During my follow-up exam, a neuro-optham. was called in to consult on my eyes (they had found out about the blurry vision by questioning me). He was so arrogant and acted like I had made the whole episode up! I hadn't even mentioned the blurry vision until the guy in the ER started asking me "have you noticed any problems with your vision recently?" How and why would I have been making it up? Argh!!! I know you understand the frustration! So, now I am possible MS. They offered me a brain mri at my follow-up, though, which I declined in favor of taking their proposed "wait and see" strategy.

Thankfully, my original symptoms of numbness have gone away, but a whole new set of problems have arisen -- bad pins and needles in my feet after walking, a strange phenomenon where my hands turn blue and then go beet red and throb and burn anytime i go from cold to hot weather, muscle cramps, leg jerks, the sensation that my feet go numb and that I am walking on marbles when I get tired, etc. Sometimes my feet or arms will feel "heavy," and it is a really distinctive feeling that is not at all normal for me. All of these wax and wane. I have also had two more UTIs. I sent my neuro an email about them and he just said that given all my previous testing his hunch is that they are not neurological in nature and that I should get some new shoes. This stung, at least in that it makes me feel that he really thinks I am a nut case. In my heart, I really doubt that I am crazy. My doc is also very young -- he must be in his first or second year of his neuro residency, and although I know that he consults with more senior neuros, I am still tempted sometimes just to book myself an appointment at the MS clinic. But it is at the same hospital and I want to avoid doctor hopping for now, and given this young neuro is actually the nicest person I have had to deal with so far, right now my plan is to go back and see him in June for my 6mo follow-up and see what happens then.

Overall, this is just so hard. I think about MS not only everyday, but many of the hours of any given day. I
think that the longer I go with symptoms and no answers, the harder rather than the easier it is getting for
me. Also, I too get the feeling that my friends and co-workers think that I am crazy. They always say things like, "my foot falls asleep too." They just don't get it, and who would given how weird it all is? But it adds a lot to my pain to be thought of by even those I care about and trust as being nutty. So at this point,
I really need an answer -- as much as I don't want MS, a dx would bring me such relief and enable me to start planning for my future accordingly. Otherwise, when I am feeling good I convince myself that I am ok, and when I am not feeling well I convince myself that I have MS. At this point, I just want to know one way or the other!

So, that's my story. I'm looking forward to hearing from all of you soon!
Take care,
Chloe

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