NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

Harry Z 01-09-2011 08:50 AM

Quote:

Originally Posted by komokazi (Post 732527)
Confused by your logic Harry. Lesions may or may not cause problems based on location. Clearly the logic would be fewer lesions would lead to less chance of being in a location the could result in symptoms. Last time I checked, how patients felt was a pretty subjective measure especially in a disease like MS - my daily fluctuations in how I feel, get around are pretty large.

Chris

Chris,

You are right in saying that lesions may or may not cause problems based on location but having only a couple of lesions in a more critical area of the brain can cause far more problems for the patient than having several in another area. A number of years ago they also found that by testing control patients, in this case university students, they discovered that lesions can come a go on a random basis without causing any problems at all.

What I'm saying is that MS patients have to look at more than just how many lesions appear on their MRI's to determine how they are doing with their MS. A patient with just a couple of lesions can really be struggling with many symptoms while another with several lesions on the MRI can be symptom free and feel "fine".

The most accurate measurement of how the patient is doing is to look at the symptoms. While "feeling fine" can be subjective, I can say that a MS patient who is really struggling with a lot of symptoms is feeling anything but "fine".

Harry

daisy.girl 01-09-2011 09:17 AM

this is such a catch 22.....doctors have to have an objective way to monitor progression. As unreliable as it may be, it seems that an increase in MRI lesions is how most neuros measure progression. As well as the drug companies.....during clinical trials, the MRI lesion load is how they determine if a MS drug is effective.

EddieF 01-09-2011 11:28 AM

Harry is right. I studied my mri for 2hrs last night and it looks BETTER then last years however i've lost sensory in most of my left arm, hand, some of neck, face, gums, lips, increased spasms/jolts/twitches.

Will study spinal cord next but at quick glance, it's the same.

"somatotopic organization of the cerebrum" pictures aren't helping me. Know any good sites that pinpoint lesion loacation/motor/sensory?

Harry Z 01-10-2011 09:33 AM

Quote:

Originally Posted by daisy.girl (Post 733122)
this is such a catch 22.....doctors have to have an objective way to monitor progression. As unreliable as it may be, it seems that an increase in MRI lesions is how most neuros measure progression. As well as the drug companies.....during clinical trials, the MRI lesion load is how they determine if a MS drug is effective.

Not wanting to turn this thread into a "lesion" debate, I will make one last comment about your statement.

Measuring MS progression by lesion count is not accurate. Disease progression is measured by the EDSS scale which takes into account the patient's symptoms and physical abilities. Some docs like to use the lesion count but this has come from the drug trial data which the companies try and use to show their medication is having an effect on the disease.

Yes a patient can have many active lesions and have disease progression but the patient can have few or no active lesions and the MS will progress.

My wife (passed away 2007) didn't have any active lesions in her brain for a number of years and her disease progressed steadily.

Harry

komokazi 01-11-2011 10:22 AM

Chimerix Commences CMX001 Open-Label Clinical Study for the Treatment of Patients With Life-Threatening or Serious dsDNA Viral Infections

http://www.prnewswire.com/news-relea...-study-for-the
-treatment-of-patients-with-life-threatening-or-serious-dsdna-viral-infections-113068214.html

Note JC Virus is one of the included viruses

Riverwild 01-11-2011 09:17 PM

Just an FYI,

There is an archived thread from this Tysabri forum (Part 1) that starts back in 2008, and it has LOADS of info for those who like to read!
http://neurotalk.psychcentral.com/thread37891.html

The current thread (Part 2) will be closing and archived as we reach high numbers and we will be starting another one to ensure that we don't mess with the server.

It's my hope that we continue to offer relevant information and support to folks who are on Tysabri, and for folks who are considering Tysabri as a therapy and would like to talk to others who are on Tysabri.

We've come a long way, and as you can see if you read all about it, we have a long way to go. Thanks to all of you who have contributed to this thread through the years. You made it what it is, a source of support and information for all of us. :grouphug:

>>>>>... Continued on Thread # 3 http://neurotalk.psychcentral.com/thread142931.html


All times are GMT -5. The time now is 04:29 PM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.