Re: Update/reply to Sherri

[Guest guest]

This does not sound like Relapsing/Remitting MS to me.This sounds more advances, more like one of the Progressiveforms. Do you have a neurologist whom you can trust?Love to you,nTo: MSersLife Sent: Sun, March 20, 2011 1:52:27 PMSubject: Update

I am 46 and live in Missouri. The weather is teasing us with bits of

spring, of course with spring comes rain, with rain comes +pain.......

My MS is R/R and has been quite resistant to treatment. Dx'd May 2010

failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs.

Now on Tysabri x 4 months. The Tysabri is helping me in marvelous

ways-walking, energy, cognition, spasticity, vision, autonomic

dysfunction..... all is improving. But WOW I thought I had really

researched the Tysabri info but more and more comes out. I am not one to

experience much fear but I think the reality of "my Ms" is really

setting in. It is weird how people think I am walking and look good on

the outside so I must be fine. I have not told anyone but my husband

about the heart thing, the Tysabri things, havent even told him about

the fear I feel, weird because feeling so much better illustrates more

clearly how sick I was. So in using the Tysabri I felt I had nothing to

loose-but apparently the # with PML is rising, Tysabri research has been

halted for lack of participation or forward movement in studyand

stopping the drug causes severe relapses-which I cannot afford to

happen.

Sherri

[Guest guest]

This does not sound like Relapsing/Remitting MS to me.This sounds more advances, more like one of the Progressiveforms. Do you have a neurologist whom you can trust?Love to you,nTo: MSersLife Sent: Sun, March 20, 2011 1:52:27 PMSubject: Update

I am 46 and live in Missouri. The weather is teasing us with bits of

spring, of course with spring comes rain, with rain comes +pain.......

My MS is R/R and has been quite resistant to treatment. Dx'd May 2010

failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs.

Now on Tysabri x 4 months. The Tysabri is helping me in marvelous

ways-walking, energy, cognition, spasticity, vision, autonomic

dysfunction..... all is improving. But WOW I thought I had really

researched the Tysabri info but more and more comes out. I am not one to

experience much fear but I think the reality of "my Ms" is really

setting in. It is weird how people think I am walking and look good on

the outside so I must be fine. I have not told anyone but my husband

about the heart thing, the Tysabri things, havent even told him about

the fear I feel, weird because feeling so much better illustrates more

clearly how sick I was. So in using the Tysabri I felt I had nothing to

loose-but apparently the # with PML is rising, Tysabri research has been

halted for lack of participation or forward movement in studyand

stopping the drug causes severe relapses-which I cannot afford to

happen.

Sherri

[Guest guest]

I think I do-ly afer all these years of it being all in my head or stress

related I do not " trust " any DR. Just now more stuff about more PML

cases-nothing like feeling stuck between rock and hard place.

>

> This does not sound like Relapsing/Remitting MS to me.

> This sounds more advances, more like one of the Progressive

> forms. Do you have a neurologist whom you can trust?

> Love to you,

> n

>

>

>

>

> ________________________________

> From: " dscrider@... "

> To: MSersLife

> Sent: Sun, March 20, 2011 1:52:27 PM

> Subject: Update

>

>

>

> I am 46 and live in Missouri. The weather is teasing us with bits of

> spring, of course with spring comes rain, with rain comes +pain.......

> My MS is R/R and has been quite resistant to treatment. Dx'd May 2010

> failed Rebif and Copaxone- 3 rounds of steroids 10days a pop IV 1000mgs.

> Now on Tysabri x 4 months. The Tysabri is helping me in marvelous

> ways-walking, energy, cognition, spasticity, vision, autonomic

> dysfunction..... all is improving. But WOW I thought I had really

> researched the Tysabri info but more and more comes out. I am not one to

> experience much fear but I think the reality of " my Ms " is really

> setting in. It is weird how people think I am walking and look good on

> the outside so I must be fine. I have not told anyone but my husband

> about the heart thing, the Tysabri things, havent even told him about

> the fear I feel, weird because feeling so much better illustrates more

> clearly how sick I was. So in using the Tysabri I felt I had nothing to

> loose-but apparently the # with PML is rising, Tysabri research has been

> halted for lack of participation or forward movement in studyand

> stopping the drug causes severe relapses-which I cannot afford to

> happen.

>

> Sherri

>