Re: Is There Hope?- reply to Rose's post

[Guest guest]

Rose, I would try to find a really good neurologist to work with her.I am so very sorry tolearn of your sister's problems. It does soundas if things have gotten very critical for her; I myself do not knowwhether any of the interferon drugs would have helped her.I hope that you will get some answers.Love to you, and to your sister,nTo:

MSersLife Sent: Wed, June 1, 2011 6:41:22 AMSubject: Is There Hope?

Hi everyone. My sixty-one year old sister was diagnosis with MS about ten years ago. One neurologist suggested she should begin inject able medication. A "second-opinion" neurologist stated that the side effects from the medication are worse than her problems then. Her MS has now progressed to where she now needs assistance to walk, get dress, take a shower, or go to the bathroom. She has limited control of her right leg and arm, which are also painful. Her speech, at times, is slurred. She has vision and hearing problems, as well as, incontinence. Considering her age, does anyone have experience with any type of medication that will "improve" her problems? I know there is no cure for MS; however, is there any hope she could improve with medication. Thanks, Rose

[Guest guest]

n/Rose

I agree with n on the interferons.. I, from personal

experience, would suggest Copaxone, and wouldn't necessarily

just take my word for it either.. Speak with a nurse at this

number 1- and tell them that you'd heard from people

taking their medication that they personally felt an improvement

in their situation.. They should tell you that it does seem to

help "some" of the people taking the medication.. When I called

them and told them that I thought I was imagining the

improvement.. I was told that this was the first time that she

(the nurse) had heard of it working so quickly, that the

earliest she'd heard of improvement in mobility/ability was two

weeks (some as far out as six months, and others didn't notice

any difference).. Then I asked why that fact wasn't part of the

literature, either website or paper brochures.. and she told me

that at one time they did, in fact, include this tidbit of info

in those things.. BUT the FDA made them remove this information

from both, because "it" wasn't part of their trials...

The Gilenya, that Sharon mentioned in an earlier post.. I'm not

saying it's not "good stuff"... but before getting involved with

that medication, one should be aware of the fact that if you

start on the oral (Gilenya/Fingoliomod) medication, you won't be

able to use Ampyra (Dalfampridine)... and that tidbit of info I

gleaned from a telephone interview with the people at Acorda,

when they were certifying, or whatever it's called, me for

receiving their medication.. Though with the memory running out

my ears right now.. I can't remember the exact reason that I

could not have the Ampyra if I was now or had ever taken the

Gilenya..

Now, personally, once again I will say.. The powers that be will

take Copaxone away from me (daily injections or not), when they

pry it out of my cold dead hands.. and I'm beginning to think

that the Ampyra will be another medication to add to that

list...

Ampyra (Dalfampridine) is the medication that has been proven to

increase walking speed... but my neurologist (he's part of all

those trial period stuffs at a Pittsburgh Neurology Specialty

thing) tells me that one of his patients who had been chair

bound for five years is now up and walking again.. I'm finding

that whether it be psychological or actually the drug.. I'm

finding that my ability to walk has improved.. just need to get

the muscles back into working order, so that they aren't

screaming from overwork as much.. <grin>.. but I DO see

& feel a difference.. might not be much to someone who has

never had any difficulty seeing to their own personal hygiene..

but to those of us that required assistance getting in and out

of the tub.. to find that they can not only walk the 6 to 8 feet

to the tub, but then get down & clean the tub, the good old

fashioned way.... then get up and step into the tub themselves..

it makes a WORLD of difference.. And being able to get out of

the house, and to the car, once again, without having to have

someone pull me through the grass in a manual chair, or having

to drive my power chair to the car.. well.. that's a tremendous

difference in lifestyle as well..

So.. for Rose... there IS HOPE... with the help of the

medications and personal determination (though a lot of mine

comes from my son harassing the heck out of me to "do better")

one can regain some of their independence!.. All is not

hopeless.. and a big part of dealing with the MonSter is finding

the right neurological "fit" between yourself and your

neurologist.. If you don't have a neurologist that specializes

in MS somewhere within the area (I have to be driven 40 plus

minutes to see my current neurologist, when the old one was 20

minutes away  -- but the difference between the two neurologists

is like night & day)..

I think I'm done ranting and raving and babbling once again..

sorry about that.. <grin>

HUGS

|)onna

Rose, I would try to find a really good neurologist to work

with her.

I am so very sorry tolearn of your sister's problems.  It does

sound

as if things have gotten very critical for her; I myself do

not know

whether any of the interferon drugs would have helped her.

I hope that you will get some answers.

Love to you, and to your sister,

n

From:

Jean

To:

MSersLife

Sent: Wed,

June 1, 2011 6:41:22 AM

Subject:

Is There Hope?

 

Hi everyone. My sixty-one year old sister was diagnosis

with MS about ten years ago. One neurologist suggested

she should begin inject able medication. A

"second-opinion" neurologist stated that the side

effects from the medication are worse than her problems

then. Her MS has now progressed to where she now needs

assistance to walk, get dress, take a shower, or go to

the bathroom. She has limited control of her right leg

and arm, which are also painful. Her speech, at times,

is slurred. She has vision and hearing problems, as well

as, incontinence. Considering her age, does anyone have

experience with any type of medication that will

"improve" her problems? I know there is no cure for MS;

however, is there any hope she could improve with

medication. Thanks, Rose