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Clinically Isolated Syndrome?

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Posted 9/27/2007 3:05 AM (GMT 0)
Anyone else been told this is their diagnosis? That's what my neuro said today. Spinal fluid totally clear, but brain MRI shows lesions, and evoked potentials "are a mess". VIEW IMAGE

Should I get 2nd opinion? She suggests strongly that I start treatment now. Of the two she offered I chose Betaseron. Guess I will be calling insurance and faxing in paperwork.

Any thoughts or words of wisdom? Total newbie here. Also have Dx of Fibromyalgia and Ankylosing Spondylitis. As if those weren't enought for one person. Thanks for all your help.
Posted 9/27/2007 10:11 AM (GMT 0)

CO_shortie said...
Anyone else been told this is their diagnosis? That's what my neuro said today. Spinal fluid totally clear, but brain MRI shows lesions, and evoked potentials "are a mess". VIEW IMAGE

Should I get 2nd opinion? She suggests strongly that I start treatment now. Of the two she offered I chose Betaseron. Guess I will be calling insurance and faxing in paperwork.

Any thoughts or words of wisdom? Total newbie here. Also have Dx of Fibromyalgia and Ankylosing Spondylitis. As if those weren't enought for one person. Thanks for all your help.

I'd start treatment now. There have been several studies done that show that the treatments might mean (no guarantee, but might mean) that you pretty much stop the disease progression in it's tracks, or at least slow it down significantly.  A "clinically isolated syndrome" may stay that way -- you may never have another episode, or flare -- or it can go on to become full-blown MS. Which you certainly  don't want to happen.

And of course you could also get a second opinion....

Posted 9/27/2007 12:40 PM (GMT 0)

CO-shortie,

I agree with Uppitycats.  If your doctor is offering treatment, you want to seriously consider that.  I have read many articles that state early treatment is extremely benficial.  Also, why not start treatment and then go for a second opinion.  That way you have not delayed treatment and you can see what another professional has to say about you.  Good luck.  There are several here with experience with betaseron so feel free to post questions you may have.  It is supposed to be a very effective medication.  Good luck and keep us posted as to how you are doing.

Love and prayers,

Posted 9/27/2007 3:27 PM (GMT 0)

Hi CO-Shortie,

 

Here is one of those articles on beginning treatment at the CIS stage:

 

http://www.webmd.com/multiple-sclerosis/news/20070601/super-early-MS-treatment-best

 

I can imagine that is this a difficult decision, and a stressful time in your life. Please take care, and let us know if we can be of any help to you.

Sunny

Posted 9/27/2007 9:10 PM (GMT 0)
Hi,

 

    I'd be more concerned with a second opinion with a doctor who wanted to "wait and see" instead of offering treatment to you at the earliest stage possible.  Studies show early treatment is best, and some doctors, like yours, are offering super early treatment even before the diagnosis becomes definite. 

 

    I wish you the best, and let us know how things go.  Here's another article about CIS in addition to Sunny's.  http://www.nationalmssociety.org/docs/HOM/CIS.pdf

 

 

Kimber

Posted 9/28/2007 4:39 AM (GMT 0)
Thank you to everyone for your help. I am going to let the information sink in over the weekend, and then make a decision. I am leaning toward starting treatment now, just having trouble justifying the cost. Time will tell. Bless everyone for all your wisdom and support.
Jan
Posted 9/28/2007 10:49 PM (GMT 0)
Wow. about a week and a half ago, I received my CIS diagnosis (blind spots for 3 days). This was after about a month of the doctors and tests I'm sure you're all familiar with (MRI, LP, etc.). By the time of the CIS Dx I'd made my peace with the likely imminent MS Dx but I'd be lying if I didn't say I've been a bit concerned about the future implications of the disease (How 'at peace' I'll be with another exacerbation remains to be seen.)

Anyway, I understood that we'd caught it early in the progression of the disease but didn't realize how early (Super-Early) until I found this site, this thread and the articles linked herein.

So, as my first ever post as a CIS/MSer I'd like to say, 'Thank you.' to all of you in this thread for giving me a little more 'peace'.

Chris
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