This morn. she text me about, "had I heard about CCVIS". She said
that this morning, she attended an MS breakfast and a Doc was
talking about new meds and therapies. Told her all I've learned of
all the new and old meds and therapies, and that none of them were
even near a cure , and some of the meds could be deadly.

She thought I was being negative (she always accuses me of
that), so she said that she is going back to her Neuro (who she
said was a pimp for meds), to see what he says. I said, do
your homework and make a totally informed decision as to,
whether or not to take one of these meds and not just to
please the Doc pushing it.

She doesnt like to talk about it and she has been in remission
and denial for 6 yrs now and I'm scared for her!!!. This
would be a terrible time for this monster to raise it's devil's ugly
head at her. Just divorced, paying high alimoney, 4 children
at home to feed!! She has a good job but will she be able to
keep up?

Please say a little prayer for us. Thank you..

Oh ((((Sally)))), what a worry this must be for you. Of course prayers and the best of wishes are on their way.

Maybe your daughter is just doing some research and covering her bases in the event that some intervention is needed at some point?
She really does sound like she has a good head on her shoulders from what you have written about her (the apple doesn't fall far from the tree).

I'm really hoping that she is just paying heed to the phrase "Hope for the best, but prepare for the worst."
Looking into and staying up to date on the treatments available for this stupid disease really helps to develop a plan of action, should the need arise. Having such a plan also allows one to carry on with life with less worry about the 'what ifs'.

Maybe ask her if that is what she is up to...so that you too can rest easy.

With love, Erika

SallyC

I can see how frustrating of a situation this could be.

I can understand where you're coming from.

You're just looking out for what is best for her.. Seeing as you have the personal experience, I, personally, would be listening and taking all the advice I could get from you.

Some people just have to make mistakes and learn from them.

I hope so much she doesn't get sucked into the big pharma hype that docs usually pull. (it's funny how they're all about these poisons, yet, if they had to take the crap it'd be a completely different story)

I am glad to hear she's been in remission for some time now.

And hope she does her research. Along with staying stress free. 4 kids? That's impressive, but a whole lotta work when all by herself.

I hope she's just being proactive and educating herself about the new meds that are available for those with MS.

I know how worrisome it can be - especially when your kids are older and don't always listen to Mom the way we wish they would.

I'll be saying a prayer for her and for you, too.

She said that she wasn't having an attack, so I guess you are all
right. I'll worry about her anyway..

I think it was a drug rep and not a Doc, speaking at the meeting??

Thanks for the prayers..

Sally, I read your post and thought about responding and then decided not to. But I am back.

First, I hope your daughter is not having a major relapse. I will be saying a prayer for both of you.

Second, I do think you should be perhaps a bit more open to at least discussing the various options with her. You have read a lot about the new therapies. Describe the pros and cons and help her find out more information. Your daughter sounds like a responsible, educated woman who is exploring options. Yes, some of these new therapies/meds may have nasty side effects and even the slight possibility of PML. But isn't it important for her to explore these if she is having a relapse and her current dmd is not working? She has a lot of responsibilities and I am sure she is afraid that she will not be able to meet them in the future. So it makes sense that she is going to seminars and trying to find out more about them. It will probably help her feel more in control if she has a plan.

Finally, I do not believe that all doctors are just a pimp for pharmaceutical companies. Maybe some are, but I know that my neuro is not. Yes, he wanted me on a dmd. When he saw how my body reacted to them and tysabri, he is now hesitant to prescribe any of the new oral meds. The MS specialists I saw at Barnes hospital agreed with him. He discusses the new meds with me, but he definitely does not push them . I believe there are other doctors like him. Hope, I am not being naïve.

I know you are just being a mom and worrying.

Just saw your post. Glad she is not having a relapse. I don't think a drug rep would be discussing CCVSI since it is a procedure not a drug therapy.

Thanks Barb. I am so sorry I offended you by using the P word.
She did call back to say that it was a local med rep. I didn't
ask any more questions. She gets mad, if I ask questions.

I have tried to discuss the meds/dmds with her, but she shut me
up and went back into her denial cave. I'm glad she is looking
into things and becoming proactive....as long as it's her idea
and not mine(KWIM?), the imp..

Oh Sally - you did not offend me at all. I just thought I should not reply at first because I did not think I should offer a mother advice.

Sal...

We moms know nothing, as far as our children are concerned...until they start to really hit the road bumps of life. Then we become so smart suddenly

Do you think part of it is that she's just plain scared? She has seen what you've experienced...

I am very negative about doctors in general. Mainly because they don't take what we say about our bodies seriously-and who knows our bodies better than we do?

I play the good girl when I'm in the neuro's office, but I vent to DH about how I feel about him and almost all docs. I have to admit that my neuro was amenable to going off DMDs, which surprised me, because I also feel that for the most part neuros seem to hand out scripts like a clown in a parade hands out candies.

So if your daughter is well-informed and goes into the doc's office with her questions and addresses her concerns about DMDs with a knowledge base, I am sure that she will be listened to.

I hope she continues to take care of herself-the stress that she has been under can't help either...I will pray for her-and for her mom

Sally, having a daughter with MS must be a big worry, especially since you know first hand exactly what you are worrying about. On the up side, though, isn’t she lucky to have you so close with all your experience with MS.

It must be hard for you to watch your daughter indulging in denial just like we all do. It also must be hard holding your tongue as she learns things you learned (and told her about) a long time ago.

I think your daughter is in very good hands - yours. I think she listens to you more than you realize. You are both so lucky to have each other.