Diagnosed this Tuesday

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Diagnosed this Tuesday

Postby KathleenE » Sun Jun 05, 2011 12:56 pm

Hi Everyone,

My name is Kathleen and I am 28 years old. I live in the Chicago, IL area and I was just diagnosed with MS this Tuesday and about three weeks earlier I was diagnosed with RA.
My story really starts with the RA. I went to see the rheumatologist because my right shoulder and forearm had a numbing sensation. I had many blood tests and he sent me for a MRI of my neck. They noticed three lesions. The doctor then prompted me to get a MRI with contrast of my brain and that's when they found several lesions in my brain. All while that was going on, the test results came back from the blood work and I tested positive for RA. I spent another few weeks going to the neurologist for a spinal tap, blood work, and an eye exam. I tested positive for MS in all those tests.
The worst part of this is, my RA is very painful and I cannot get treatment for it until I have the treatment for the MS figured out. My neurologist is checking to see if they have any openings in a MS clinical trial they are currently conducting in Chicago. This trial consists of only two injections a year with all follow up and other testing being covered by the hospital.

Has anyone on this forum been involved with a clinical trial? What kind of medications are you taking? I am afraid of the possible side effects of all these medications.

Thanks in advance for the help,

Kathleen
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Postby dlb » Sun Jun 05, 2011 5:25 pm

Hi Kathleen,

Welcome to the site.
I have not participated in a clinical trial although I was interested in doing so in the very beginning. When I asked my doctor about that prospect, he almost cautioned me against trying to participate in a trial. His reasoning was that he wanted me to start some kind of disease-modifying meds sooner than later and that simply may not happen as a clinical trial participant. I guess it depends on the type of trial, but in the case of a double blind trial, you may be a person that is selected to receive the placebo and then you have just gone a period of time without any form of medication that may benefit you. It is a difficult choice - one wants to do something for the good of finding answers, but we also have to consider our own journey in wellness....
Best wishes in your journey!

Deb
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Postby emaugust » Mon Jun 06, 2011 9:07 am

As a fellow 28 year old Chicagoan diagnosed with MS this week, welcome to this-isms (as I call it :p). Time to start learning!
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Postby KathleenE » Mon Jun 06, 2011 9:27 am

Thank you for the welcomes.

emaugust, who is your neurologist? I am seeing a doctor at U of C.
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Postby emaugust » Mon Jun 06, 2011 7:15 pm

I am seeing Dr. McCoyd at Loyola. I have been pretty impressed by him and his nurse is apparently some heavy hitter in the MS scene (at conferences in europe all the time) so that will help me getting fast tracked with Gilenya or something.
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Postby KathleenE » Tue Jun 07, 2011 2:45 pm

emaugust wrote:I am seeing Dr. McCoyd at Loyola. I have been pretty impressed by him and his nurse is apparently some heavy hitter in the MS scene (at conferences in europe all the time) so that will help me getting fast tracked with Gilenya or something.


Eric, we managed to tell Phil F. we both had MS in the same week. He told me yesterday that you had it and I told him I had thought your screen name on this forum looked familiar...small world, huh?
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