[MommaDucks]

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...

[SallyC]

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..

[TRESA]

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.

[EddieF]

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).

[TRESA]

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?

[MommaDucks]

Originally Posted by TRESA

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.

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..

[TRESA]

Hey MommaDuck - Please don't let a moment of guilt enter your mind or heart. You have been a very young woman caring for 3 children.

Your father has only NOW indicated that he is in need of your assistance with your mother.

It was your role to be preoccupied with your young life, marriage (?), and raising of 3 little duckies.

They have not wanted or needed help until now - and you are responding as a very responsible young woman and daughter.

No Guilt necessary.

How do I know? Because I am your mother's age and stubborn like her.

I like to "believe" I can manage myself on my own. And, still do, despite all the grublings of docs, case workers, family, friends, etc. If I listened to every good wisher, I would be in a rocker with my life passing me by - in other words, in my mind, it would be OVER....UGH.

She pushes herself...to push away MS. She keeps busy with the little tasks as that is all she is probably capable of doing and yet it helps her keep believing that she is a viable and functioning adult still.

Do not try to "control" your mother but do get involved as to "help" her as
she is prepared to begin to let go of controlling herself.

Its a hard proceedure to let go...and let others...when you have enjoyed being the one (mother, wife etc) managing your family's life.

Spend time getting informed - as you are doing - put guilt aside - it has no place here and is not a necessary feeling. You are being a very responsible and caring daughter.

Your father may be starting to feel overwhelmed or scared about the disease and the lost of his wife's capabilities. He might need your comfort, courage, and support.

Your mother mostly needs her needs to be met-food, shelter, warmth, help with bathing, dressing. She needs a very calm, stressless environment, some entertainment- I cant stand to stay at home everyday-I go out even if it is only for a drive about town - breaks up the monotony of boredom - and all you can do about the medical is to learn and advocate to the best of your ability and trust in your doctors - as best as you can.

Finding a trustworthy doctor is the first priority for me. Then I do put my health in his hands all the while reading and studying up on this disease as I can - to keep tabs on doc doing what is best.

I have learned from nurses - that the actually better docs are usually the ones at the university hospitals who are very up to date on the research being done for their specific disease interest.

I am going to the university hospital next week to see one of these specialists. I have done the round of regular neuros.

Also, you can go to different universities online- Boston, texas, calif, florida etc and go to the university hospital and look up the docs and get a biography on their background of schooling, researches etc. Helps a lot.

Good luck - and its a joy to help a wonderful daughter as she begins to assume a more responsible position in her own parents life.

Its a role most children refuse and it takes a mature woman to react as you are so doing.

May God's blessings be with you and all your family.

You put a big smile in my heart - for your mom and dad in having raised such a loving daughter.

[Grammie 2 3]

Hi MommaDucks, I will be 62 next month; have had 50 Tysabri infusions.
First I need to say, take a deep breath little lady, you are not responsible for your mom or dad. Bless you for being such a caring daughter and being willing to do what you can. My adult children are caring, interested, loving, kind; they do what they can when they can but they have their lives of which I am thankfully included. Even my dear husband is not responsible for me-he helps me to the best of his ability.

As for Tysabri ... how are her MRIs ? Is she getting them every 6 months ?
It doesn't sound like it is halting/slowing your mother's progression. If I wasn't doing as well as I am on Tysabri I would probably be looking into another med. This is me and I'm not advising.

I hope you can go to your mother's dr appt and ask questions so you, your mother and dad will have knowledge to be able to help make an educated decision after hearing what the neuro says.

I went to a ms presentation Sat given by Drs from the Rocky Mtn ms Center. They have so much knowledge. Maybe your mom with your help can get in touch with a dr there and get his perspective . Phone # is 1-866-557-7030 . The director is Dr. Timothy Vollmer the other 2 presenters Dr. Corboy and Dr. Mirvalle (I think )

I think your mom is very lucky to have you for her daughter!

Best wishes,
Linda

[EddieF]

Tresa - I'm losing feeling in my fingers little by little over the past couple yrs. Spasms are increasing in areas I can't duplicate. My face is going numb, my gums, neck where I shave, top of head, that's pretty much it. Im on Ampyra and work out to the max so strength is staying where nerve damage is not. Sucks.