Tex is right on and as an 80's lady you probably view life fairly similarly- meet a challenge head-on and overcome it. Heck, from very early age we are brought up to think that you fix what needs fixing. When it comes to medical stuff, many of us were brought up to think that modern medicine & its doctors can 'fix what ails ya'. Sadly, some of us will have to learn this is not always true, even doctors have trouble not being able to make the diagnosis & cure

"Acceptance" can be a very bitter pill to swallow. Some of can learn to accept that we can't overcome everything; some of us struggle with not being "in control"; and some of us never quite get to that point. This is a journey with an unknown destination (says a gal who plans out trips, has a GPS, keeps to a schedule and gets nutty if I have to change course midway...)

To me, it sounds like your DH is worried about you running out of options for treatment. Men get more afraid about our situations than we are. They want to fix us even if we know it isn't fixable.

They don't understand how we could be willing to accept doing nothing if there is something out there that "might" help but might give us an even worse disease.

I made up my mind months ago that I wouldn't go on Tysabri because of a gut feeling. It had nothing to do with statistics or numbers of cases of PML. It was me just feeling it wasn't right for me. I can't explain it anymore than that. I did have the test done because my neuro ordered it and I'm negative for the antibodies. I guess I could do Tysabri, but I'm not going to do it.

I would sooner do more IVSM and risk my bone density. Others are more afraid of the steroids. We each have to decide what is right for ourselves. I had great success with IVSM in recovering from a very debilitating attack. I know other people who didn't feel that steroids did much for them.

Unless the test for the JC Virus isn't covered under your insurance, you might consider just doing it. It's just a blood test. It might end the whole discussion about Tysabri if you are positive for the antibodies. Even if you are negative for the antibodies, it would also just shut everyone up for awhile.

It sounds like you are OK on Copaxone right now so there isn't any rush to change anything. There are new drugs on the horizon that might end up a better option. There is also more time to see what happens with Tysabri with more years on the market. I have friends who found Tysabri to be a miracle and others who didn't see a lot of improvement and went off of it. It all seems like a crapshoot. What works for one, doesn't work for another.

You sound very frustrated with family support and at the end of your rope. I've been there and I have found therapy for me to be far more beneficial. I'm learning coping strategies for myself and how to better handle those around me. I also have someone to just listen to me and support me without condition.

I hope your situation improves and you feel better soon.

:hug:

TX, your post made me cry. I did have another heart to heart with dh and he said almost exactly what you said. He even cried while saying it. He says he hates seeing me in pain and there isnt anything he can do about it. It was good for him to finally tell me what was going on in there. He said what if the pain gets so bad the pills dont help? I said, well I wonder if maryjane is legal here... and we both laughed really hard. A friend of mine with MS does smoke that, and she said seeing as I dont smoke she'd send me some special brownies :D We both needed a good laugh. Felt good. As for the jc virus test, I will just do it and get it over with. Im used to needles now, no biggie I guess.

What a great great thread, filled with wisdom and actual help. I'm so glad you managed to have a real good talk with DH, Kittylady!
My husband is dead, for nearly four years, and I know it would be so much help to me if I could talk to him. My son won't talk, daughter-in-law just echos anything son does or thinks or says. No other relatives except two grandsons, ten and 7, who are smart but without life experience in the things we are talking about.
My only talk help lately has been a young woman priest, half my age, at the Episcopal church. She and I seem to have had very similar experiences. She deals a lot with illness, too, her mother's undiagnosable (even at Mayo) disease, her own illnesses, her children's illnesses. I will, I fear, become dependent on her--and she is not my daughter or anyone who owes me help. But for now, she is what I have. And she is a gift. So for now, hallelujah that she is there.

I had a counselor and she was good to vent to after Irv died, but now our conversations come at life from totally different points of view.
She is much closer in age to me than "Mother A". but her "answers" are not mine. I find I have already tried everything she suggests, and found them no longer helpful.

I'm so glad that you and DH had another talk and things straightened out better for you two. I can understand how people lose their tempers when they feel helpless about a loved one who is having a hard time. I've done it myself to my DH. I felt bad that I did, but I couldn't seem to control myself. hugs

This is an amazing forum. So much more soul leading (can't think of a better term, psychological leading doesn't sound right) than on the other forums I go to, which are the Porphyria and Myeloproliferative forums at other addresses, not on Neuro talk). Completely different mood. We help people on the Porph forum, but it is primarily with addressing "triggers", not much about healing mood. On the Myeloproliferative forum, the same: discussion on drugs, side effects of drugs, etc., very little about mood. People with MS have a harder time, just in general, in getting physical help, so they must find a "soul" way to cope, I find. It looks to me definitely that MS people have a terrible time finding "drug" help that really works, or if it works, it just causes havoc with side effects. It seems to me that almost no help for MS in Medicine has been found and/or verified. Always a new drug coming out (heard of a new one yesterday for MS) but always side effects which are very difficult.