PML

[agate]

This says a little bit about how plasmapheresis is typically administered:

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[SuzE-Q]

I really disagreed with the FDA opening up the hearing on whether Tysabri should be reintroduced to layperson testimony.

I strongly believe this should be made by unbiased scientists who are better able to weigh pros versus cons and risks than people who can only consider the deadly risk of PML from a theoretical standpoint and also bring emotion and desperation to a decision that I believe has no place for those factors.

Really happy to see our former forum member as an ambassador there, hoping that means she's doing well! Miss her contributions here!

[stillstANNding]

When the Tysabri was reintroduced after months of being off the market, it no longer worked for her (as I remember).
ANN

[agate]

I hope this is OK to do--here is a link to the MS Focus magazine with that person's first column in it on page 70 (which for some reason comes up in the PDF file as pages 66-67). There is a little more about her on page 4:

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(Referring to the former member of this board mentioned in a couple of earlier posts)

[stillstANNding]

"That Person" mentioned in Agate's post is someone who testified in the FDA hearings not the patient w a ? of PML.

Regarding my friend, she feels well today. I have talked to her twice. She had a second MRI today and then the plasmapheresis. She was much clearer in the call after the treatment. A nurse came and asked her questions. She got everything right but the year. And she was much more animated tonight.

I know from her husband that her docs have talked to the Shepard Center among others and also a scientist from Biogen.

Keep the prayers coming.

ANN

[SuzE-Q]

Hopeful news, ANN!! Hopefully the inflammation is lessening with plasmapheresis.

[stillstANNding]

Yes, Suze..:-)

The husband said that the Atlanta folk do steroids and plasmapheresis at the same time. Friend's docs don't want to do that.

ANN

[SuzE-Q]

Yes, Suze..:-)

The husband said that the Atlanta folk do steroids and plasmapheresis at the same time. Friend's docs don't want to do that.

ANN

I'm not sure steroids are a good idea either with a massive infection, since they lower immunity.

IVIG?

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[stillstANNding]

I talked w my friend this morning. Today is an off day for plasmapharesis. I noticed that she has a cough and strongly suggested that she tell her nurse which she did.

Her memory seems better again today.

Her vision is worse, "I can see letters and they look pretty but I can't read them."

The doc told her she may need to re-learn some things.

ANN

[stillstANNding]

Also, the doctor, friend and husband were talking this AM and friend said to husband, "Where did he go?" The doctor had moved and she couldn't see him.

ANN

[Virginia]

Still praying Ann!

[agate]

Most neurological disorders are terrible but this one must be particularly dreadful. It does sound as if the doctor believes she can relearn some things, and that sounds good.

[stillstANNding]

We haven't finished plasmapheresis. Tomorrow is #3. Then there will be IRIS. I don't know if that is a possibility or a probability.

Today I told her about this thread and that people were praying for her. She said that I could give out her email and she would be glad to answer any questions and help any one that she could. Then I reminded her of her vision and reading problems and she laughed and laughed. She has a great laugh.

ANN

[Earth Mother 2 Angels]

((((((Ann)))))) ~

I am joining in prayer for your friend for a complete recovery. I'm praying for her husband and family, and for her wonderful friends, like you, who are providing her with strength and loving support.

Sending healing, positive energy ~

Love & Light,

Rose

[stillstANNding]

Friend just called me. Yes, she remembered to push speed dial 3 and was able to do it. She is happy that she got the date right this morning. Then she got it all wrong when talking to me.

She wanted to tell me the new plan which is to give her a third plasmapheresis today and no fourth one and send her home tomorrow! Oh my. She is concerned that that is not right. She would love to be home but she does not feel ready. We discussed her being home alone while husband works. She will try to talk to the doctor caring for her at the hospital before tomorrow.

ANN