Hello... yet another new diagnosee (?)

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Hello... yet another new diagnosee (?)

Postby traceracer » Mon Jun 26, 2006 7:50 pm

Hello all,
I am 32 years old and live in Maryland. At the end of March, I was admitted to the hospital because my doctor and my neurologist thought I might have had menangitis. I didn't, actually. Instead they found some lesions on my brain and ran me through 7 days of tests. They checked for strokes, heart disease, lyme diesease, and MS. I had two spinal taps (they didn't have enough fluid from the menangitis test left for the MS and lyme disease test) 3 more hours of MRI's (w/ and w/o contrast), x-rays, a whole bunch of crazy tests. Two of the tests on my spinal fluid came back positive for MS. Three came back normal. I didn't realize there were actually tests for MS; I thought it was one of those 'rule out everything else' things.

Anyway, to go back a little further. I have been a migraine sufferer since 3rd grade. I was hospitalized for them in the 4th grade, again with the fear of menangitis. Had the Cat Scan, the eeg, the spinal tap.. all that fun stuff then as well. I had aura ones where I'd have vision disturbances and nausea. The frequency was down for several years. Once I started teaching, they came back with a vengence. They tried me on Topomax (lost all motor skills on my right side) and Lamictal, which didn't have much effect. I have prescriptions for 8 different triptans, Ultram, muscle relaxers. Then I had reconstructive surgery on my septum and now I only have menstrual ones. I had hoped that the lesions were from migraines but it seems that they were in the wrong place for that.

Anyway, back to the MS.

A third series of MRI's, a month after I was discharged, showed more lesions had developed. In the hospital I had been given a serious dose of IV steroids over three days and they hoped that would show improvement in my brain, but alas, my brain didn't get that memo. My second neurlogist, the head of the practice, told me in a very light hearted manner that I had MS. That actually made it better than the doomsayer way, I guess. He said that at this point it was asymptomatic ... that I'd feel really fatigued when the lesions were active and I might have a few other minor symptoms. Currently what I notice is my short term memory isn't all that great and I slur when I speak sometimes. My students have asked me if I was drunk a couple of times. That's hard to explain away since I don't want to share that personal part of my life with them.

My doctor said that he wants to start me on interferon eventually. He said even though it's currently asymptomatic, he'd like to keep it that way. The reason we're not doing it now is my husband and I are trying to have a baby. He also told me I should stay away from prolonged exposure to heat, that it could cause exacerbation.

I have a couple reactions to this whole thing. One is fear, obviously. I feel extremely lucky right now that I'm asymptomatic and am scared of it getting worse. Though I'm also afraid of the side effects of interferon. Or what having a child could do to me. Or will I be unable to care for a child if it does get worse. In a way, I also feel a bit relieved. I couldn't understand why I felt so tired all the time. I knew I had a lot of stress from my teaching job, but even in the summers I was feeling fatigued. I don't think my husband quite appreciates the significance. We were at a theme park this weekend and it was hot and I said that I should probably sit somewhere cool for awhile and he didn't really reply. It could be because neither of us really talked about it since we left the doctor's office. We had a party planned the night I found out and I made the theme, "Here's to the MS being asymptomatic!" instead of being serious about it. I guess neither of us really dealt with it yet. Though with it being asymptomatic, it makes it seem almost not real.

I'm sorry, I already spoke too long and probably gave TMI. I guess I just needed to really talk about it or vent or whatever.

Thanks for your time.
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welcome!!!

Postby jimmylegs » Mon Jun 26, 2006 8:01 pm

welcome traceracer, the beginning time is very scary isn't it! i hope you find all the answers you seek here. there is much information here for your help!
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Postby Arron » Mon Jun 26, 2006 10:24 pm

hi traceracer, welcome to the community!

thank you for such a wonderfully detailed introduction-- it's definitely not TMI and it helps people here know where you're coming from.

you'll be fine as a mother, and should know that most women find pregnancy to be the best treatment for MS possible, in fact we wrote a story about that a while ago:

http://www.thisisms.com/article151.html

with open arms,
-a
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby oreo » Tue Jun 27, 2006 6:33 pm

Vent away. We all need to every once in a while. This is one of the few places where everyone else seems to understand that. Sorry you qualitfy to join the group, but it is nice to have you here.
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Postby EyeDoc » Wed Jul 05, 2006 8:30 am

There is one thing in your post that I would really like to address: you must talk to your spouse and communicate what you are feeling! You said that you two have not really spoken about it much since the diagnosis. In my experience, my spouse is the only person in my life that sees that sees me every day and sees the symptoms I have. She is the only person that knows all of my fears and sees my daily struggles. Communication with her is the best thing I have going. However, it took me a year or two to get comfortable with sharing all of my "junk" even with her. Now that I am communicating with her better, it truly assuages a large portion of my daily internal struggle. It helps immensely to have a partner in this roller coaster that is MS.
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