Clinically Isolated Syndrome

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

KayBee
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/3/2007 7:09 PM (GMT -7)   
This is my first post. I was just diagnosed yesterday with clinically isolated syndrome. Have 6-8 lesions on different parts of my brain. Had double vision in October, and then I developed tingling and stiffness in my legs and on one side of my face. A couple of times I had difficulty forming my words. So, the neurologist tells me this is not yet MS, but 90% chance of becoming MS so I should take Avonex. But is this really enough to be so confident that I should go on drugs? He thinks that the double vision was the first exacerbation, but it only happened three times in an hour and then went away. It was weird...one image on top of the other. I had a CT scan and lumbar puncture. Both were normal. Then, a month later, my legs started tingling, and since then they are getting stiffer. I can still do everything I usually did, but I get tired easier. And should I go on Avonex before they can even know if this will be MS, and if it is MS, whether it will be primary progressive or relapsing remitting...would the drugs be the same for each? I asked them to do another MRI, one of the spine because of the tingling...that will take 3-4 months...wondering if I should wait for that before deciding about medication. I am also worried about cognitive effects since I teach in a university...Any thoughts?

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/4/2007 8:55 AM (GMT -7)   
KayBee said...
This is my first post. I was just diagnosed yesterday with clinically isolated syndrome. Have 6-8 lesions on different parts of my brain. Had double vision in October, and then I developed tingling and stiffness in my legs and on one side of my face. A couple of times I had difficulty forming my words. So, the neurologist tells me this is not yet MS, but 90% chance of becoming MS so I should take Avonex. But is this really enough to be so confident that I should go on drugs? He thinks that the double vision was the first exacerbation, but it only happened three times in an hour and then went away. It was weird...one image on top of the other. I had a CT scan and lumbar puncture. Both were normal. Then, a month later, my legs started tingling, and since then they are getting stiffer. I can still do everything I usually did, but I get tired easier. And should I go on Avonex before they can even know if this will be MS, and if it is MS, whether it will be primary progressive or relapsing remitting...would the drugs be the same for each? I asked them to do another MRI, one of the spine because of the tingling...that will take 3-4 months...wondering if I should wait for that before deciding about medication. I am also worried about cognitive effects since I teach in a university...Any thoughts?
I am so sorry you are facing all of this! You must be feeling overwhelmed right now.
 
I think your doctor's opinion is right-on: start on the Avonex right away, and reduce your chances of experiencing a serious exacerbation, and slow the course of the disease.
 
A "90% chance of becoming MS" is pretty high odds that indeed it will become that.  With that many lesions appearing on an MRI, and scattered early symptoms, I think your doctor is offering the most prudent course -- start on one of the medications.
 
CT scans aren't helpful in diagnosing MS, but can rule out other causes of similar symptoms. And apparently there was nothing showing up there.
 
As to whether it is "primary-progressive or relapsing-remitting" -- your chances are great that it is relapsing-remitting, but neither you nor your doctor will know right away.  The designation happens over time, watching and seeing how the disease might affect you.  Generally the primary progressive course is the most severely debilitating, and fortunately the more rare. 
 
Right now, the meds are used primarly for relapsing-remitting MS, and what is called "secondary-progressive" MS -- a sort of 'second stage'. After you've had MS for awhile, you might experience a situation like mine -- no new exacerbations, but no real improvement in symptoms, either...but a general slow..very slow...decline. (I've had MS since 1983, when it was diagnosed.  Was relapsing-remitting for 12 or more years; now considered "secondary progressive". I've been on Betaseron for the last 13 years...)
 
After you've had time to absorb all this, don't hesitate to come back with more questions. We'll try to help.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


KayBee
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 1/7/2007 6:48 PM (GMT -7)   
Thanks Uppity. I think I am just scared. I want this to go away. I want to believe that I might be one of the 20% who has no more symptoms. But everyone says the same thing --- go on the meds. I just have to get the courage to call the clinic.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 6:33 AM (GMT -7)   
And you have every right to be scared. And angry. And uncertain. And sad. And then you just gotta take charge of what you can, and make that call. It'll be all right. Lots of us here have had to do this, and we're surviving. I "celebrate" my 24 years with MS next month....
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, November 23, 2017 7:13 PM (GMT -7)
There are a total of 2,897,307 posts in 317,996 threads.
View Active Threads


Who's Online
This forum has 157569 registered members. Please welcome our newest member, Sunseaker.
248 Guest(s), 15 Registered Member(s) are currently online.  Details
chris1960, BnotAfraid, breakthecycle, theHTreturns..., Rikky1, Pirouette, Scots, GeetarMan, arb90, Girlie, Mercy&Grace, Sherrine, Pratoman, songlady, RobinTN


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.