I don't get it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Myoak]

Hi Mable,

Relevant to your last question and comment you may be interested in what one prominent MS specialist stated about early suppression of MS inflammation may favorably modify the longer-term disease course.

A quote from Timothy Vollmer at the Rocky Mountain MS Center, "If we wait until patients have fixed disability, we have waited too long. They have lost so much neural tissue that we can't restore function. What I think is critical for everyone to understand is this: it's not where patients are now that's important. It's where they may be when they are 55 or 65 years of age. What we are trying to do is protect their brains for their futures."

Every MS patient makes decisions involving risk and they are seldom easy decisions to make. To me it seems as though there is never a “perfect choice”. We assemble all the information we can, listen to counsel from MS specialists and then make the best guess we are capable of. Thank God we have several treatments to choose from. Something we often fail at is realizing there is risk not only in choosing a specific treatment but there is risk in not choosing it, also. It is an aspect which must be considered. Best to ya!


Hey Mr. Hexed!
Sorry about my mistake. If you care to search my previous posts a couple may be helpful to answering some of your questions. The dates I suggest are two posts on 4-28-11, two made 7-1-11 and one posted on 8-24-11. You can find them by clicking on my name. Best Wishes!

[MSJimmy]

The Risk of Just Getting Up in the Morning

I am getting ready to start Tysabri and I am JCV negative. My MS continues to progress with the development of new lesions and increased disability. After reading all the post here, I believe it really boils down to a basic question, what quality of life are you willing to accept? Granted, Tysabri maybe a total bust for me and I continue down the merry road to further disability, but if it can slow or even stall the progression at this point I believe it is worth it - for me.
This is a personal decision that everyone must make on their own. I did ran accross some interesting facts that I thought I would share below. Just makes you want to not even get out of bed in the morning based on what you might be faced with ...


STATISTICS TAKEN FROM “INJURY FACTS 2012 EDITION”

LIFETIME ODDS OF DEATH FOR SELECTED CAUSES: UNITED STATES, 2008*

TOTAL ANY CAUSE 1 IN 1
HEART DISEASE 1 IN 6
CANCER 1 IN 7
STROKE 1 IN 29
MOTOR VEHICLE INCIDENT 1 IN 96
INTENTIONAL SELF-HARM 1 IN 109
UNINTENTIONAL POISONING 1 IN 126
FALLS 1 IN 163
ASSAULT BY FIREARM 1 - 321
CAR OCCUPANT 1 IN 368
PEDESTRIAN 1 -701
MOTORCYCLE RIDER 1 IN 761
FIREARMS ACCIDENTAL DISCHARGE 1 IN 6,609
AIRPLANE INCIDENT 1 IN 7,178
ELECTICUTION 1 IN 12,420
HEAT INJURY 1 IN 13,217
CATACLYSMIC STORM 1 IN 29,196
CONTACT WITH HORNETS, WASPS AND BEES 1 – 79,842
EARTHQUAKE 1 IN 97,807
LEGAL EXECUTION 1 IN 111,779
LIGHTNING 1 IN 134,906
BITTEN BY DOG 1 IN 144,899
FLOOD 1 IN 558,896
FIREWORKS DISCHARGE 1 IN 652,046

*Source: National Safety Council estimates based on data from National Center for Health Statistics–Mortality Data for 2008 as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Population and life expectancy data are from the U.S. Census Bureau. For mortality figures, estimated one-year and lifetime odds, and external cause classification codes based on the Tenth Revision of the World Health Organization’s “The International Classification of Diseases” (ICD) for the causes illustrated, see table on pages 41-42.

[BigA]

This raises such good questions. I've always wondered if it's better to start with the most effective medecine.

That said, there is said to be a potential "rebound effect" which means that after you stop, you go to where you would have been without ever having taken Tysabri. It's worth asking your Neuro about this.

Which is the next question: Doesn't everyone on Tysabri eventually stop? Once you start, does anyone plan to continue for 10 years?

I'm taking first line drugs until something better comes along. I wouldn't start with Tysabri as my first Therapy unless my disease was particulary agressive.

[hexed]

Hexed: You only have light symptoms and not having major events and you're considering Tysabri?

I would be surprised if your doctor would even let you. I think you have to have a very active disease even to be considered.

My Dr. (Dr. Benjamin Greenberg at UT Southwestern in Dallas TX) has told me that the only medication that he would not offer me is the chemo based treatment. This is due to the fact that I have very minimal symptoms. He said out of all of the others he would call fairly equal except for Tysabri. He said that the acceptence rate is higher than the others but that I would most likely be JCV+ so don't get my hopes up. He sent my test off and said if I AM jcv-, then he would definitely recommend it. He said a little over a year ago before they had as much data on PML, he said he would not recommend it to anyone.

His approach he said is very aggresive. He said we need to make sure we get me on a DMD that works for me, and that has minimal side effects. He said if I am on a drug that makes my life worse in any way, that we would get me on another drug asap. His quote was "There are too many options now for someone to live life more miserable than the disease makes them"... or something to that affect. He is currently the Deputy Director of the Multiple Sclerosis Program and Director of the new Transverse Myelitis and Neuromyelitis Optica Program at UT Southwestern.

Can anyone explain how Tysabri is the more "aggresive" drug? Is this based on the PML diagnoses? Is there something else that makes it "that" much more dangerous? It seems like a drug that has minimal side effects when compared to the CRAB drugs..

[ru4cats]

hexed,
Sounds like you're new to MS. The following link to Dr. Vollmer has a great presentation he gave on all of the MS drugs. This should help to clarify all the MS drugs.

http://www.mscenter.org/videos/resea...vollmer-part-1

"Aggressive" in regards to MS means "most effective." My neurologist placed me on Ty 2 years ago because she wanted to hit it hard. Ty has the highest % for fewer relapses and the slowing of progression. I started before the JC test and would have gone with Ty for at least 18 infusions just to give me the best chance with my MS. I did test - so I'll be on Ty for the foreseeable future. Best of luck on your decision.

[sprint]

major event deffinition

What is considered a major event? Is optic neuritis with consisent numbness, gait,cog issues major or is it not being able to get out of bed. What is the tipping point?

I only see people with MS at the clinic. A few are my age, some seem worse off than me but theyre taking steroids not ty. I assume we all have the same neuro leaving me wondering why me. Where is the touch program matrix neuro use to perscribe. Whats the major event look like.