PML

[stillstANNding]

Sally, I remember so many of us having the Avonex Flu. That was for 3 or 4 days every week but got better over time.

I am sorry that your daughter has side effects to the Aubagio. What does she think?

Rose, yes! I thought she would go frim hospital to physical rehab for many reasons including making her feel safe.

ANN

[Virginia]

Ann, I definitely think she should have more medical care. Is there a possibility that Doctors are letting this slide because they feel that there is nothing they can do for her. Or do you think husband has just got too much on his plate and is not being assertive enough?

I remember the Avonex flu, but it did not last but half to 3/4 of a day and then went away. I wish my Doctor had left me on it until Rebif came on the market. I honestly think he was too green about MS way back then and thought I would do good on Copaxone. I was doing well on Avonex. I only stayed on Copaxone 6 months because I was getting worse all the time. By then Rebif came along and we changed it.

Sally, I know there are a lot of disagreements on here about this subject, but I hope that if your Daughter cannot stay on the drug she is on now, that she will find one she can. She is young and it is not worth the risk of not being on one.

[stillstANNding]

My dear friend has not talked for almost 2 days. I can hear her trying. Sort of lip smacking but not a sound.

Husband was crying, I was crying.

MRI Thursday.

Please pray, send up good wishes, etc.
ANN

[agate]

It sounds as if she's taking a turn for the worse--? I keep trusting all of those reports saying that most people with Tysabri-related PML survive it and recover, often with minimal deficits.

I'm keeping her in my thoughts, ANN, and I'm sure everybody here is hoping for a favorable outcome for her.

[jendie]

My dear friend has not talked for almost 2 days. I can hear her trying. Sort of lip smacking but not a sound.

Husband was crying, I was crying.

MRI Thursday.

Please pray, send up good wishes, etc.
ANN

I hope she gets the help she needs for resolving this issue soon. I can't even imagine what she's going through.

[Sunshine]

Where is your friend? Is it a major medical center? It seems like from what you post the care is substandard.

[Earth Mother 2 Angels]

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

I'm so sorry your friend is having so many complex problems. So alarming and devastating for her, her husband, you and everyone, who loves her. My prayers are going up for her healing, and that her physician(s) will do more to help her. Prayers for strength for you too.

Love & Light,

Rose

[SuzE-Q]

Where is your friend? Is it a major medical center? It seems like from what you post the care is substandard.

No, ANN indicated earlier that she's been at home now for a few weeks, I think.

Oh, what a terrible turn. It looks like she hadn't stabilized if she's worsened. Or maybe it's just MS now. No idea how they tell it apart, I didn't even know PML could continue to progress once they got the med out of your system.

Please let us know what happens, ok? If she can't speak and has disordered thinking, she can't possibly be left alone at all, can she?

I'm so sorry, ANN. This is not news you were hoping for, to be sure.

[stillstANNding]

She is at home and I had the talk w her husband about why she isn't in a Rehab hospital. I get answered: Well, the doctor did say that she wants (my friend) to do some of that therapy at some point.

She had 3 plasmaphoresis (every other day) and was discharged to home the next day. Since then I know she saw her neuro on or about 12/22. She's had 2 MRI's an an attempt at a third. She has another tomorrow.

Doc doesn't work on Friday so it won't be dealt with until Tuesday.

It's maddening. I fight w her husband a little but only a little because he has all the power right now.
ANN

[SuzE-Q]

You are in a difficult position. It's his call, so somewhat delicate balance for you to advocate for her needs without him feeling pressured or judged and risk him potentially pushing you out of the loop entirely.

[stillstANNding]

I want to do my best for her. For that to happen, I have to keep him talking w me.

ANN

[stillstANNding]

Yesterday, friend took a bad turn (what?) and is being hospitalized today or tomorrow. We are trying to get tix to fly out there to see her.

That's all I know.

[Sunshine]

Oh no. I am very sorry to hear this. Be sure to take care of yourself

[Sunshine]

Is it a good marriage betweeen your friend and her husband?

It sounds like he is either stupid, passive, inexperienced talking to doctors, or doesn't care about the outcome.

[Earth Mother 2 Angels]

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

I'm so very sorry. I hope that you'll be able to get tickets to go to her. Perhaps you'll get an opportunity to speak directly with her physicians. I am sending healing energy and prayers that the doctors will be able to help her.

Love & Light,

Rose