to all

[Guest guest]

secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory

lo=ss throught body every nerve and musle effecting mobility and dexterity tried

most conventional meds including tx with plasama exchange none have help am on

rebiff no longer respondingand ampyra only reaon i am still walk, dr have also

found a small nerve fiber neuropathy testing being done seeing a dr justin

macarthur at john hopkins baltimore he is considering novantronebut insurace

blocking cardia testing needed to se if i qualify

i grow worse daily losing more functon and has effeted my upper torso arms hands

chest ribs and spine neck and numb inisde mouth and throat,pretty much

everything any movement brins on severe vibration now Lhemmites which i have not

expeinceed in yrs and burning througout body in also weakness and fatiuge walk

alittle and it initias futher progeess of all syptoms

does anyone here have progessive m ?what have u tried that worked i know we are

not all the same

would appreciae some feedback

deborah copeland

[Guest guest]

Sorry to hear about your problems!As I understand it, Rebif (and the other CRAB drugs) isn't used with progressive MS, but I know Tysabri is, as well as Novantrone, that you mention. I/we don't have any experience with those drugs, though, but others on the list do. Chemotherapy is used some times too. I hope you can find a way to work around that insurance problem, and be able to try out medication that will work better for you!love/Reb>> secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory lo=ss throught body every nerve and musle effecting mobility and dexterity tried most conventional meds including tx with plasama exchange none have help am on rebiff no longer respondingand ampyra only reaon i am still walk, dr have also found a small nerve fiber neuropathy testing being done seeing a dr justin macarthur at john hopkins baltimore he is considering novantronebut insurace blocking cardia testing needed to se if i qualify> i grow worse daily losing more functon and has effeted my upper torso arms hands chest ribs and spine neck and numb inisde mouth and throat,pretty much everything any movement brins on severe vibration now Lhemmites which i have not expeinceed in yrs and burning througout body in also weakness and fatiuge walk alittle and it initias futher progeess of all syptoms > does anyone here have progessive m ?what have u tried that worked i know we are not all the same> would appreciae some feedback> deborah copeland>

[Guest guest]

Wow, Deborah, you have so much going on. I am so sorry you are having such a terrible time my friend. I just have RRMS, so I don't think I can be of much help, although I have heard of folks having good success with novantrone. I am glad you are being seen at Hopkins; they are world-renowned! Please keep posting and letting us know what is going on with you. All my best wishes for some healing to happen.hugs, KateFrom: Deborah Copeland

To: MSersLife Sent: Thu, December 16, 2010 6:41:36 AMSubject: to all

secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory lo=ss throught body every nerve and musle effecting mobility and dexterity tried most conventional meds including tx with plasama exchange none have help am on rebiff no longer respondingand ampyra only reaon i am still walk, dr have also found a small nerve fiber neuropathy testing being done seeing a dr justin macarthur at john hopkins baltimore he is considering novantronebut insurace blocking cardia testing needed to se if i qualify

i grow worse daily losing more functon and has effeted my upper torso arms hands chest ribs and spine neck and numb inisde mouth and throat,pretty much everything any movement brins on severe vibration now Lhemmites which i have not expeinceed in yrs and burning througout body in also weakness and fatiuge walk alittle and it initias futher progeess of all syptoms

does anyone here have progessive m ?what have u tried that worked i know we are not all the same

would appreciae some feedback

deborah copeland

[Guest guest]

I am so sorry you are having such a hard time of it, Deborah. MS is so strange because some people are barely affected while others are so severely affected. MS is not an 'equal opportunity employer' at all.What does your neuro say to try next? I know some people use a kind of chemo therapy treatment. I have heard good things about Novantrone. I searched for information for you and found a few sites. I would imagine n will be able to send even better links to you. http://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/index.htmlhttp://www.mssociety.org.uk/about_ms/care_and_support/support_for_people_severely_affected_by_ms/complex_symptoms.htmlhttp://wwwmsviewsandrelatednews.blogspot.com/2010/09/treatment-options-for-severe-spasticity.htmllove and big hugs to you SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or

defects. To: MSersLife Sent: Thu, December 16, 2010 4:41:36 AMSubject: to all

secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory lo=ss throught body every nerve and musle effecting mobility and dexterity tried most conventional meds including tx with plasama exchange none have help am on rebiff no longer respondingand ampyra only reaon i am still walk, dr have also found a small nerve fiber neuropathy testing being done seeing a dr justin macarthur at john hopkins baltimore he is considering novantronebut insurace blocking cardia testing needed to se if i qualifyi grow worse daily losing more functon and has effeted my upper torso arms hands chest ribs and spine neck and numb inisde mouth and throat,pretty much everything any movement brins on severe vibration now Lhemmites which i have not expeinceed in yrs and burning througout body in also weakness and fatiuge walk alittle and it initias futher progeess of all syptoms does anyone here have progessive m ?what have u tried that worked i know

we are not all the samewould appreciae some feedbackdeborah copeland------------------------------------

[Guest guest]

Deborah, I'm supposedly spms. My first at least documented episode was in 1979 with encephalogmyletis. The last few years I've really noticed the progression especially with my walking, balance or lack thereof, and incredible fatigue. I don't know if it's because my walk is so bad but being on my feet for a few minutes and my back hurts so much. It's so frustrating having to take a break just vacuumning one room! Bladder problems have gotten much worse too.

L'hermitte is the one thing that never left me from the initial attack. All I have to do is bend my head down and it's like a pulsating knife going down my spine. As far as meds, I lived in NW Ontario, fairly isolated, and all I've been given is baclofen. I was told it would take too long for any of the drugs to work, the side effects weren't worth it yadada. In fact my internist (not a neuro) doesn't believe in using the CRAB's or Tysabri.

I'm hoping that I'll have sold my house by the summer and I'll go out of country for angioplasty for CCSVI. I have no expectation other than it slowing the progression down and anything else would be a plus.

Best of luck at s Hopkins. I know it has a great reputation ... hugs, Cait

to all

secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory lo=ss throught body every nerve and musle effecting mobility and dexterity tried most conventional meds including tx with plasama exchange none have help am on rebiff no longer respondingand ampyra only reaon i am still walk, dr have also found a small nerve fiber neuropathy testing being done seeing a dr justin macarthur at john hopkins baltimore he is considering novantronebut insurace blocking cardia testing needed to se if i qualifyi grow worse daily losing more functon and has effeted my upper torso arms hands chest ribs and spine neck and numb inisde mouth and throat,pretty much everything any movement brins on severe vibration now Lhemmites which i have not expeinceed in yrs and burning througout body in also weakness and fatiuge walk alittle and it initias futher progeess of all syptoms does anyone here have progessive m ?what have u tried that worked i know we are not all the samewould appreciae some feedbackdeborah copeland

[Guest guest]

Deborah,

I am secondary progressive with relapsing tendencies, at this

point. I can't say for certain how long I've been at this type,

however, I was also relapsing/remitting for more than a few

years too. I was diagnosed in 2000, but diagnosing neurologist

stated that my medical history suggested that I had been living

with the MonSter for at least 10 years prior to that.

I started therapy with Avonex, and continued that for 4 years,

then I went cold turkey for 2 years, and then in 2006 I started

on Copaxone. I had very good luck with the Copaxone, and was

able to stop using a cane for assistance, and even returned to

work, part-time, until May 2009. I then had an flare that wasn't

super kind to me, though I did get a lot of the skin sensation

back on my left side, it's not 100%. A fall at the beginning of

the flare messed up both my knees, the pain kept me from working

as diligently as I should have to gain more of my mobility back.

I still have balance issues and pretty much keep to my chair

these days to prevent a fall.

I'm am currently still on Copaxone. I do like this therapy,

though I've had difficulty staying with the daily injections

since the flare in 2009. My fault there though because I have no

given "routine" daily, and I tend to forget. (When I was

working, it was very easy to remember.. my morning routine was

the same nearly every day, and the injection became as routine

as drinking my morning coffee).. Those are the only two

modifying therapies that I have tried.

I changed neurologists around January 2007, and have since then,

had Gabapentin added to the Baclofen (the only thing the old

neurologist EVER prescribed, other than Provigil for fatigue and

Xanax for panic attacks).. The Gabapentin was added for Nerve

Pain, and then Keppra was added to that this past year as well.

I'm still noticing progression, though it's still slow in

coming, and some days I'm worse than others, and then other days

I'm better than others as well. It's kind of like a roller

coaster around here in that aspect. Some days I have

Lhermittie's and others I don't. I've noticed St. Vitus Dance

coming back, just recently, after more than a couple years of

being completely absent. Of course, the ever present bowel and

bladder issues as well. Weakness stays away, so long as I

remember to take my Copaxone, though I'm not lifting much these

days, and a vacuum would push me further than I could push it.

Fatigue has been a major part of my life for the past several

weeks, following what I thought was a bout of Optic Neuritis,

but the neuro-ophthalmologist diagnosed Ocular Migraines (at the

end of November), and a week or so later, I experienced my very

first UTI. My new insurance company just approved the request to

add Provigil to my "care plan" for fatigue.

I'm sorry to hear that you are having such a rough time with the

MonSter right now. I sure hope that you, or your doctor, can get

the insurance company to agree to the testing you need to have

completed to start on the Novantrone. And I definitely hope

& pray that you will finally see a remission in most of what

you are experiencing right now.

HUGS

|)onna

secondy poresive ms last3 yrs rms with full recovery preious 17 yr sever sensory lo=ss throught body every nerve and musle effecting mobility and dexterity tried most conventional meds including tx with plasama exchange none have help am on rebiff no longer respondingand ampyra only reaon i am still walk, dr have also found a small nerve fiber neuropathy testing being done seeing a dr justin macarthur at john hopkins baltimore he is considering novantronebut insurace blocking cardia testing needed to se if i qualify

i grow worse daily losing more functon and has effeted my upper torso arms hands chest ribs and spine neck and numb inisde mouth and throat,pretty much everything any movement brins on severe vibration now Lhemmites which i have not expeinceed in yrs and burning througout body in also weakness and fatiuge walk alittle and it initias futher progeess of all syptoms does anyone here have progessive m ?what have u tried that worked i know we are not all the same

would appreciae some feedback

deborah copeland

[Guest guest]

Reb,

Just a short blurb to your understanding of the CRAB drugs being

used when the MonSter is in Progressive Form..

Even though Doc stated that I was indeed Secondary

Progressive... he quickly added the "with relapsing tendencies"

to the records when I mentioned to him that my current health

insurance company would use ANY excuse to deny medications...

So my thinking is, that we can get around the "only approved for

relapsing forms of MS" by adding the "with relapsing tendencies"

to the medical records.. and those of us with SPMS do, in fact,

see relapses, if using the definition of relapse as being "the

worsening of existing symptoms or development of new symptoms."

Just me very own two cents here..

HUGS

|)onna

Sorry to

hear about your problems!

As I

understand it, Rebif (and the other CRAB drugs) isn't used

with progressive MS, but I know Tysabri is, as well as

Novantrone, that you mention. I/we don't have any experience

with those drugs, though, but others on the list do.

Chemotherapy is used some times too.

I

hope you can find a way to work around that insurance problem,

and be able to try out medication that will work better for

you!

love

/Reb