My Neuro keeping me at 28 days

[lindaincolorado]

My neuro said to stay with what Biogen claims for best efficacy-every 28 days. I will... he is at the RMmsC-I trust him!
Today I had infusion #71

[LL60]

Congraultations Linda.

I would also trust them at RMMSC. I get there newsletters and they really seem to know what they are talking about.

So glad you are doing so well on it. Yea!

[REG53]

I wish you all the best Linda.

[lindaincolorado]

LL60 and REG53, Thank you
I am waiting for the result of the jcv test I had done 8/9. I so want it to be NEGATIVE -Duh

[msmoonlite]

lindaincolorado, did your JCV test results come back yet?

I am so glad the test came out this year since I would never have considered Ty otherwise, but darn if those results didn't seem to take forever!!

[lindaincolorado]

still waiting msmoonlite ...

[lindaincolorado]

In case you missed my other thread .. my jcv test came back NEGATIVE

[LL60]

Linda - how long did it take you to get the results of your test? I seem to remember people saying it takes a long time. I had mine done the 18 of Sept.

I didn't want the test and refused for over a year; now that I have had it, I want to know the results.

[lindaincolorado]

Hi LL60, it took a little over 4 weeks
I remember reading you did not want the test and held out for quite some time Did you change your mind or did your neuro change it for you ?
I know the feeling of wanting the answer ! I am so HOPING Negative for you !!

[LL60]

Thanks Linda, I would breathe a sigh of great relief if it comes back negative.

This is why I changed my mind, nothing really the doctor said, but more from information from following leads to good web sites I got from others here.

I was having symptoms of dizziness that my doctor was scared was PML and ordered a stat MRI and an app. with her and the paperwork filed out to go get the JCV test. I still refused to get the test, did get the MRI and made the app. to go in and see her. My MRI was stable as it has been since being on Tysabri. All the neuro tests were unchanged as well. (The dizziness has since stopped)

We talked and I shared the web site that easily and quickly explained the risks with simple numbers and grafts. She pointed out to me the flaws of having a HMO. She felt that if I was positive and had symptoms that it would get them to test and treat me faster than if that wasn't in my chart. ( As it was, a "stat" MRI took 8 days to get. ) She said it would be only a matter of a day or two. She said a spinal tap would done within hours.

I liked the idea that if I am negative, my chances of getting PML are 1 in 11,000. It would just get one worry out of my life. Not that I worry about it, but when the new numbers come out, I do sit and think about it for a bit.

If it comes back positive, I will have to sit and do a lot of thinking. Not about going off of Tysabri. Can't see me doing that. But will have to think about my job. I work with ill children. I will have to just think about that. I get no benifits and no retirement and am too young for SS, so not sure what I will do. In the meantime, I get all my shots and do excellent hand washing.

[REG53]

Linda that is wonderful! I am still waiting to hear from my retest.

LL60- I hope you are Neg. also.

[LL60]

I am positive.
Oh well.

[REG53]

LL60- I am sorry you are positive and I wish you the best with ty and your job.

[lindaincolorado]

doggone it LL60
I wish you my best with making your decision!
Linda