Multiple Sclerosis

Posted on: Tue, Jun 24 2008 11:18 AM

Posted by: kcollins Posts: 2

Sally, I believe MS is not the worst disease.  It is the most frustrating. I have been diagnosed since 1998 but have had MS since 21 looking at the MRI scans.  My early signs were imbalance and dizzyness.   I have had a great life, 3 wonderful adult children, traveled widely.  I did take disability retirement a year before my full retirement.  That choice was wise for me because of the reduction in stress and taking the time to take care of myself.  I have not had an excerbation in 1yr, 7 months.  My walking is not any better and I am in a powerwheelchair approximately 90% of the day.  Please remember Our Attitude is the only thing we have control over.  I feel I have much time and things to do in the next decades although differently than when I was 25.  Take care of yourself.

Posted on: Thu, Jul 31 2008 10:17 PM

Posted by: tippy Posts: 1

I have been on Tysabri for 15 months and have not had one side effect.  I think it is wonderful.  No more injections or bruising.  I was on Rebif and Methotrexate and had horrible side effects.  Tysabri is great. Infusion is an hour, you stay for one hour observation, and no needles or anything til the next infusion. Everyone in my infusion group has been on it from 6 mos to 2 years and we wouldn't trade if for anything.

Posted on: Tue, Jul 21 2009 6:31 PM

Posted by: Tawni Posts: 2

I was diagnosed 8 years ago with MS. I am now 41 years old.  6 weeks ago I went to the ER with a "migraine". Well, I ended up in Critical Care Unit with hydrocephalus and they found a "lesion" on my brain stem blocking the fluid from draining from my brain. They put me on a high dose of steroids followed by a medrol pak. I'm very scared because they can't determine if it's a MS lesion or some other lesion and they will not operate because of the risk of death because of the location on my brainstem. But the answer to your question is you may need a low dose steroid to decrease the inflamation caused by the lesion.

Posted on: Tue, Jul 21 2009 6:35 PM

Posted by: Tawni Posts: 2

I guess I'm one of the few with really bad side effects. They would premedicate me with phenergan, Tylenol and reglan but I still managed to vomit non stop and flu like symptoms 3 days afterwards. I had to stop. I'm happy it's worked for you, it sounds really promising and I wish I could have stayed on it.