Search found 25 matches

by valanhb
Thu Mar 11, 2010 7:43 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: Rebound Effect - Is it real?
Replies: 11
Views: 4456

Re: re: IRIS

IRIS?! That sounds like a red herring to me - IRIS is caused by plasmapheresis, which is used to get Tysabri out of your system as quickly as possible if you have PML. Either your neuro's PA doesn't have a clue, or your neuro has a patient who developed PML... I agree, I think it was a red herring....
by valanhb
Wed Mar 03, 2010 11:33 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: We need your input on a very important decision
Replies: 132
Views: 21357

Vonna and all, I really like the idea of spreading the word in a non-confrontational manner at events like the MS walk where people who either have MS or who love someone with MS will be gathering. :D You guys have really taken it and ran with it and I hope this is carried into action! I'm somewhat ...
by valanhb
Wed Mar 03, 2010 8:30 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: Rebound Effect - Is it real?
Replies: 11
Views: 4456

Just in case this shows up in other people's searches for Rebound Effect +Tysabri (I know it did for me!) here's what has happened to me since my last infusion on 01/06/10 Went through the same roller coaster as usual for the first month, as expected. Had to reschedule 1st February infusion appt. Su...
by valanhb
Mon Mar 01, 2010 4:06 pm
Forum: General Discussion
Topic: Relapse
Replies: 12
Views: 2152

Re: timing of symptoms

At times, I have symptoms, such as numbness, that come and go for minutes or hours, lasting for days at a time. My MS Clinic says that the symptoms need last continuously for 24 hrs or more to qualify. Does anyone else have this? Yes, I have this too. I always think that when I tell my neuro "occas...
by valanhb
Fri Feb 26, 2010 9:50 am
Forum: General Discussion
Topic: migrane as a first symptom of ms
Replies: 29
Views: 4363

Migraines started when I was a teenager. Just the horrible pain, light and sound sensitivity, and throwing up was a sign that the end was near - then I would sleep for hours. Those continued on occassionally until my early-thirties. Never diagnosed as they weren't frequent enough to warrant meds or ...
by valanhb
Fri Feb 26, 2010 8:49 am
Forum: General Discussion
Topic: Relapse
Replies: 12
Views: 2152

Scared? Oh yeah! New symptoms, change in treatment, heck even when old ones come back and don't want to let go. For me especially right now - I've gone through almost all the usual treatments - interferons and Tysabri - and my body won't tolerate any of them. Neuro doesn't know where to go either, j...
by valanhb
Tue Feb 23, 2010 4:27 pm
Forum: General Discussion
Topic: Disabled facilities in the US
Replies: 4
Views: 1411

Oops, I remembered that right after I posted, and edited my first post to include that. :oops: I *should* have remembered it right off - I see parts of it all the time in my job! :lol: I have to say that the US is fairly progressive when it comes to legislating disabled access, especially wheelchair...
by valanhb
Tue Feb 23, 2010 4:15 pm
Forum: General Discussion
Topic: Disabled facilities in the US
Replies: 4
Views: 1411

With few exceptions, buildings (as well as employers, public entities and transportation) have to meet the Americans with Disabilities Act (ADA) which was passed and signed into law in 1990 and effective in 1992. It was amended in 2008 to include broader protections for people with disabilities, whi...
by valanhb
Mon Feb 22, 2010 4:42 pm
Forum: General Discussion
Topic: Cladribine and Fingolimod - Herpes
Replies: 8
Views: 4388

You know, I am supposed to be waiting to go on one of these once they are approved and available to the market. I've had rare, strange reactions to other DMDs. You know the "less than 4% and less than 7%" (two different side effects) which combined would be almost never. So I look at the rare, "oh y...
by valanhb
Mon Feb 22, 2010 2:04 pm
Forum: General Discussion
Topic: Cellcept for MS?
Replies: 3
Views: 2604

It could be that there's no studies for Cellcept being used alone as a treatment for MS. I can't use the interferons, so it be a standalone treatment. :)
by valanhb
Mon Feb 22, 2010 11:46 am
Forum: General Discussion
Topic: Cellcept for MS?
Replies: 3
Views: 2604

Cellcept for MS?

I searched the forums and the threads I found were either a couple years old or talking about using it in conjunction with CRABs. Since I am an odd little duck :lol: and my body will not tolerate the CRABs or Tysabri, my neuro suggested Cellcept as an alternative to keep me on some sort of treatment...
by valanhb
Mon Feb 22, 2010 10:34 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: Thinking of stopping Tysabri. Thoughts appreciated
Replies: 30
Views: 17454

gymbuff, I am SO glad that Tysabri works for you! I was really hoping it would work for me too. I know that T and I are the minority in having these reactions, but the really bad part of it is that a) they don't tell you that this is even possible, just the horrors of PML (I'm sure our reaction is m...
by valanhb
Thu Feb 18, 2010 8:56 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: Thinking of stopping Tysabri. Thoughts appreciated
Replies: 30
Views: 17454

Hey T (and everyone else ;) ) Just wanted to update you on my situation. I saw my neuro('s PA, but she's primary on my case) on Tuesday. Here's what happened. (Sorry, I'm longwinded...it's in my nature!) She always asks when we're walking in how I'm feeling. For once I could answer, "Pretty good, ac...
by valanhb
Tue Feb 16, 2010 11:53 am
Forum: Tysabri (Antegren or Natalizumab)
Topic: Thinking of stopping Tysabri. Thoughts appreciated
Replies: 30
Views: 17454

Weight gain? :lol: Weight LOSS if anything! One of the side effects is loss of appetite, and it says clearly that Cymbalta should not be prescribed to anorexics. And BONUS - it's also indicated for nerve pain, if you have that issue. :) Now I'm almost scared to try anything else for depression with ...
by valanhb
Mon Feb 15, 2010 7:24 pm
Forum: Tysabri (Antegren or Natalizumab)
Topic: Thinking of stopping Tysabri. Thoughts appreciated
Replies: 30
Views: 17454

Sorry I didn't get back to you. :oops: I actually had to work some extra hours. But at the same time...I could actually work some extra hours!! I didn't have that mind-numbing fatigue! :D You asked about pain control, and yeah I'm on a few prescription pain control meds. I have Cymbalta (depression ...

Go to advanced search