I know there is an entire thread, but I'm not finding an answer to my questions and concerns.

My mother has MS, Dx back in '98-'99. She was on some med (forgot the name) for years, followed by Copaxone for a long while, then just over 2 years ago was switched to Tysabri..

Today was her monthly infusion and had a she had an appt. with her Neurologist. He spoke with my father about the side effects and the risk of PML(?)

My question is, how do you know if the Tysabri is working? And is it worth the risks? I know all meds have risks, but how do you know if they outweigh the benefits?

Her MS symptoms have been steadily increasing over the past 10 years. Including while on this. She is still able to walk and mostly refuses her cane and walker though is just starting to give into using each more often this year. She bladder is weaker than ever and has resorted to wearing adult diapers when leaving the house. Her memory is getting so much worse, she is getting so forgetful, repeats things numerous times during a 5-10 minute phone conversation, and is so easily agitated..

Anyway, how do I know if this is normal? How do I know it wouldn't be much worse if she wasn't on Tysabri? How do I know these symptoms are worse than they would be if she weren't on this?

All I learned from the phone call I recieved from my father is, the dr wants them to decide if she is staying on it, or wanting to try a new med, and that I really need to play a more active role in her health care...

If Your Mother is progressing in disability while on Tysabri, then I would say it's not working for her. It seems the Doc may agree, if he/she wants you to make a dicision to change Drugs?

There are new drugs coming out and may or may not help her. Not all of the MS meds work for all...actually just a small percentage seem to get the full benefit of any given MS drug.

Good wishes and good luck on your journey to help your Mother manage her disease..

So sorry to hear about your mother. How old is she? Since she is still able to walk -even with occassional cane etc - she is really doing good. I still walk around but have lost the bladder.

I am a strong voice in advocating for EXCERCISE - walking the block numerous times a day has "greatly" helped me.

As for the meds and affects - and since your father is asking for your help - why not go and talk to her doctor with your parents so you can ask him your very good questions.

He knows her health best.

Just may little suggestion for what its worth.

Lets us know the answers to these questions - I'd like to know the answers too.

I've been on Ty for 12 months (Already used Copaxone, Rebif) and i'm still progressing quite rapidly. Copaxone was 1st and best med for me while it worked (3yrs).

Eddie - I think she and I would like to know how you "know" you are progressing rapidly - is it by MRI's (increase of lesions) or is it your symptoms that indicate the progression.

Do you get MRIs or other scans regularly?

Thank you and everyone else for replying so quickly.

My mother will be 56 next month. She is a very stubborn lady who will only do things her way. Her idea of exercise is housework, which is not what she used to consider housework, just things like dishes, sweeping, swiffering, and dusting. And not all daily. She mostly sits in her chair all day long. When we (family members and doctors) tell her she needs to exercise she will only do small movements with an OT, but nothing on her own.

She falls once every one-two months, but her stubborn attitude stops her from using her cane. Her gait is very unsteady and she had to grab onto the walls, chairs, and tables as she walks through her house. Last week when her and my father made a surprise visit to my home (2nd flr apt) he had to push her up the stairs, I still am upset at him bringing her here as stairs are very hard for her. With her stubbornness she doesn't tell her doctors the whole truths of her symptoms. She is afraid of coming off "weak" and "old" (her words, not mine.)

As long as I can find a sitter for my 3 children I will definitely be going to her next infusion appointment or neurologist appointment. My father and her are not very proactive, "ask questions", type of people and just let doctors makes every little decision without knowing what's going on. It doesn't help everything that my mother is told, when she goes alone (which is usually what happens) she doesn't remember by the time she gets home.



Whats bothering me is, I am feeling overly guilty for not knowing the answers to what is going on with her illness. I should play a more active role. I am her oldest child, I am the one who will have to take care of final plans when she or my father pass in the (hopefully very far) future. I need to make more of an effort and help her more and know what exactly is going on with her care.
The guilt has been eating at me slowly for a while, but after my father's call to me today, it's been much worse..