Re: Opinions of other therapies

[Guest guest]

ISnt it weird?? LDN also might slow down the progression, it doesnt hurt to take it, no side effects really to speak of, and it is addordable even to people like me who have no health insurance. YEt it is realllllllly difficult to fing docs who will prescribe it. They would rather take chances with expensive, painful drugs which have awful side effects,-----this is insane!

Nola

[low dose naltrexone] Opinions of other therapies

I would like to hear from ANYONE who has had good luck with any of the ABCR's (soon to add a T). I mean the kind of success that can be proven beyond a shadow of a doubt is attributed to the drug. I don't mean the 'well, I think the drug is helping me' kind of proof.

I'm not being crass. I am just so tired of arguing with my neuro when he tells me that I NEED to be on a traditional therapy. I ask him what improvements I can expect, and he tells me that it MIGHT slow down the progression. I've told him I'm taking my chances with LDN. He tunes out that part.

With the exception of being much stiffer (I think due to lack of mobility), I'm right where I've been for 7 years.

Marcie

[Guest guest]

Marcie, I LOVE Copaxone but it is not indicated to

stop disease progression. Never was. It has been the

only thing the neuro's have tried that stopped my

constant exacerbations, like every 6 weeks at longest

between them. I did Avonex, LDN, chemo, plasma

exchange, monthly solumedrol and I saw improvements

with each besides Avonex and the chemo. I want to try

LDN again and will soon. It helped but my MRI after

being on it for 6 months was " too many new lesions to

count. " I still believe in the LDN but we're all so

different. My sis has ms and Avonex works for her.

Yeah, daily shots suck but I'm not looking into a

nursing home anymore. SO I LOVE COPAXONE! Good luck.

Donna

[Guest guest]

Marcie,

Good for you, stick to your "Gut" thoughts. I'm on LDN since 7/8/03... no progression. I also use a lot of supplements. The drugs are all a hopeful experiment. I have a good neuro that tells me to keep doing what I do and is in favor of my routine.

Regards,

Tom

[low dose naltrexone] Opinions of other therapies

I would like to hear from ANYONE who has had good luck with any of the ABCR's (soon to add a T). I mean the kind of success that can be proven beyond a shadow of a doubt is attributed to the drug. I don't mean the 'well, I think the drug is helping me' kind of proof.

I'm not being crass. I am just so tired of arguing with my neuro when he tells me that I NEED to be on a traditional therapy. I ask him what improvements I can expect, and he tells me that it MIGHT slow down the progression. I've told him I'm taking my chances with LDN. He tunes out that part.

With the exception of being much stiffer (I think due to lack of mobility), I'm right where I've been for 7 years.

Marcie

[Guest guest]

Donna, How progressed are you? Marcie donna chopyak <colorsntrees@...> wrote: Marcie, I LOVE Copaxone but it is not indicated tostop disease progression. Never was. It has been theonly thing the neuro's have tried that stopped myconstant exacerbations, like every 6 weeks at longestbetween them. I did Avonex, LDN, chemo, plasmaexchange, monthly solumedrol and

I saw improvementswith each besides Avonex and the chemo. I want to tryLDN again and will soon. It helped but my MRI afterbeing on it for 6 months was "too many new lesions tocount." I still believe in the LDN but we're all sodifferent. My sis has ms and Avonex works for her.Yeah, daily shots suck but I'm not looking into anursing home anymore. SO I LOVE COPAXONE! Good luck.Donna

[Guest guest]

I got the usual RRMS diagnosis. After a year I was

told I'm chronic relapsing and they never really saw a

case like mine. I get really bad like doc wanting to

use a feeding tube, respirator and a baclofen pump but

get about 90 percent back each time. January will be 3

years I've been diagnosed. I'm 31 by the way. I tried

many things so far but it is such an individual

disease, you have to I think. No, I had no symptoms

before my first MRI and was immediately diagnosed from

the MRI and the symptoms I was having. Feel free to

ask what I might be able to help with.

[Guest guest]

Marcie, follow your gut. Your higher self is telling you to steer clear. It may sound silly to some but I believe the deepest part of our being knows what we should do. We just need to examine ourselves and ask God to help us. He will show you a path and then it is up to you to be proactive and follow your spirit. Kathy

[low dose naltrexone] Opinions of other therapies

I would like to hear from ANYONE who has had good luck with any of the ABCR's (soon to add a T). I mean the kind of success that can be proven beyond a shadow of a doubt is attributed to the drug. I don't mean the 'well, I think the drug is helping me' kind of proof.

I'm not being crass. I am just so tired of arguing with my neuro when he tells me that I NEED to be on a traditional therapy. I ask him what improvements I can expect, and he tells me that it MIGHT slow down the progression. I've told him I'm taking my chances with LDN. He tunes out that part.

With the exception of being much stiffer (I think due to lack of mobility), I'm right where I've been for 7 years.

Marcie

[Guest guest]

Donna, I've about come to the conclusion that RRMS, SPMS & PPMS really don't mean too much. I can understand that if the Copaxone seems to be keeping a relapse from occuring, you should take it. I'm past that point though, and the recent bladder infections kicked my butt! I can't seem to get any strength back. Stay well! Marcie donna chopyak <colorsntrees@...> wrote: I got the usual RRMS diagnosis. After a year I wastold I'm chronic relapsing and they never really saw acase like mine. I get really bad like doc wanting touse a feeding tube, respirator and a baclofen pump butget about 90 percent back each time. January will be 3years I've been diagnosed. I'm 31 by the way. I triedmany things so far but it is such an individualdisease, you have to I think. No, I had no symptomsbefore my first MRI and was immediately diagnosed fromthe MRI and the symptoms I was having. Feel free toask what I might be able to help with.

[Guest guest]

i think its getting much easier to find a doctor. we have great success with the dvd and doctors taking the time to look at it. cyndiOn Sep 9, 2006, at 12:23 PM, oothappam wrote: ISnt it weird?? LDN also might slow down the progression, it doesnt hurt to take it, no side effects really to speak of, and it is addordable even to people like me  who have no health insurance. YEt it is realllllllly difficult to fing docs who will prescribe it. They would rather take chances with expensive, painful drugs which have awful side effects,-----this is insane! Nola [low dose naltrexone] Opinions of other therapies I would like to hear from ANYONE who has had good luck with any of the ABCR's (soon to add a T).  I mean the kind of success that can be proven beyond a shadow of a doubt is attributed to the drug.  I don't mean the 'well, I think the drug is helping me' kind of proof.   I'm not being crass.  I am just so tired of arguing with my neuro when he tells me that I NEED to be on a traditional therapy.  I ask him what improvements I can expect, and he tells me that it MIGHT slow down the progression.  I've told him I'm taking my chances with LDN.  He tunes out that part.   With the exception of being much stiffer (I think due to lack of mobility), I'm right where I've been for 7 years.   Marcie

[Guest guest]

Marcie, Try to keep as cool as you can on hot, humid days because they zap our strength. Make sure you are eating healthy and pace your activities and rest in between. I was always very busy and it was difficult to pace myself but I have made it to sixty two and use a cane and still enjoy my Grandchildren. I am still looking for a cure to MS but it is not LDN. Parmajak

Re: [low dose naltrexone] Opinions of other therapies

Donna,

I've about come to the conclusion that RRMS, SPMS & PPMS really don't mean too much. I can understand that if the Copaxone seems to be keeping a relapse from occuring, you should take it. I'm past that point though, and the recent bladder infections kicked my butt! I can't seem to get any strength back.

Stay well!

Marcie

donna chopyak <colorsntrees@...> wrote:

I got the usual RRMS diagnosis. After a year I wastold I'm chronic relapsing and they never really saw acase like mine. I get really bad like doc wanting touse a feeding tube, respirator and a baclofen pump butget about 90 percent back each time. January will be 3years I've been diagnosed. I'm 31 by the way. I triedmany things so far but it is such an individualdisease, you have to I think. No, I had no symptomsbefore my first MRI and was immediately diagnosed fromthe MRI and the symptoms I was having. Feel free toask what I might be able to help with.

[Guest guest]

Parmajak1, You name it, I've tried it! I think different things cause MS in different people. For that reason, I don't expect a cure in my lifetime. I do all of the suggestions that you make. Good advise. I don't have to do anything to be without any strength. I'm 44, and it is pretty scary to not be able to do for myself. LDN isn't a cure. I never thought that. It's the danged bladder infections that have kicked my butt! Marcie June Kreuzer <parmajak1@...> wrote: Marcie, Try to keep as cool as you can on hot, humid days because they zap our strength. Make sure you are eating healthy and pace your activities and rest in between. I was always very busy and it was difficult to pace myself but I have made it to sixty two and use a cane and still enjoy my Grandchildren. I am still looking for a cure to MS but it is not LDN. Parmajak Re: [low dose naltrexone] Opinions of other therapies Donna, I've about come to the conclusion that RRMS, SPMS & PPMS really don't mean too much. I can understand that if the Copaxone seems to be keeping a relapse from occuring, you should take it. I'm past that point though, and the recent bladder infections kicked my butt! I can't seem to get any strength back. Stay well! Marcie donna chopyak <colorsntrees > wrote: I got the usual RRMS diagnosis. After a year I wastold I'm chronic relapsing and they never really saw acase like mine. I get really bad like doc wanting touse a feeding tube, respirator and a baclofen pump butget about 90 percent back each time. January will be 3years I've been diagnosed. I'm 31 by the way. I triedmany things so far but it is such an individualdisease, you have to I think. No, I had no symptomsbefore my first MRI and was immediately diagnosed fromthe MRI and the symptoms I was having. Feel free toask what I might be able to help with.

[Guest guest]

I agree Marcie. I prefer the docs keep me as RRMS on

paper so I can keep getting my Copaxone. Sorry, had to

go meet my man's parents for the first time for dinner

yesterday. PHEW. lol The labels come down to

formularies and treatments docs can get covered, and

that's about all IMO. I'm so sorry for you not getting

your strength back YET! I refuse to not believe,

especially in myself. The docs thought I'd never get

out of the hospital, screw that! That was almost 2

years ago now. I refuse to believe that you can't make

gains. I think you can, the trial and error part of

figuring out how is what sucks. I was in paralysis

mode when I got out of the hospital last time and it

took 2 weeks to be able to move my toes on one foot

and longer to get the other foot, then ankle circles

and so on, but I was able to eventually do lots of

things I thought were in the past. Give yourself time

and DON'T YOU DARE GIVE UP ON YOURSELF! If you're

having trouble believing in what you can gain back,

I'll believe in you! You get better!

Donna [usually in all caps, lol]

I'm past that point though, and the recent bladder

infections kicked my butt! I can't seem to get any

strength back.

>

> Stay well!

>

> Marcie

[Guest guest]

Thanks Donna! If I don't wear my wrists and shoulders out I'll be OK! I have to lift myself for everything. Good thing I'm not too big! Marcie donna chopyak <colorsntrees@...> wrote: I agree Marcie. I prefer the docs keep me as RRMS onpaper so I can keep getting my Copaxone. Sorry, had togo meet my man's parents for the first time for dinneryesterday. PHEW. lol The labels come

down toformularies and treatments docs can get covered, and that's about all IMO. I'm so sorry for you not gettingyour strength back YET! I refuse to not believe,especially in myself. The docs thought I'd never getout of the hospital, screw that! That was almost 2years ago now. I refuse to believe that you can't makegains. I think you can, the trial and error part offiguring out how is what sucks. I was in paralysismode when I got out of the hospital last time and ittook 2 weeks to be able to move my toes on one footand longer to get the other foot, then ankle circlesand so on, but I was able to eventually do lots ofthings I thought were in the past. Give yourself timeand DON'T YOU DARE GIVE UP ON YOURSELF! If you'rehaving trouble believing in what you can gain back,I'll believe in you! You get better! Donna [usually in all caps, lol]I'm past that point though, and the recent bladderinfections

kicked my butt! I can't seem to get anystrength back.> > Stay well! > > Marcie

[Guest guest]

Marcie, if you want help coming up with physical

therapy kind of stuff that might help, just email me

off board and I can get more details and we'll work up

a pt plan for you to fit your capabilities right now.

I BELIEVE IN YOU! I really think you can make

significant gains still. You decide your life and it's

time to start dreaming again. That's my first

assignment...lol...See, I'm a much easier teacher than

this disease.

Donna

[Guest guest]

Marcie, I have had a few bladder infections and had Penicillin and got over them quickly. I was tested to make sure I VOIDED everything, take time to get every drop out so you don't have more infections.

Re: [low dose naltrexone] Opinions of other therapies

Donna,

I've about come to the conclusion that RRMS, SPMS & PPMS really don't mean too much. I can understand that if the Copaxone seems to be keeping a relapse from occuring, you should take it. I'm past that point though, and the recent bladder infections kicked my butt! I can't seem to get any strength back.

Stay well!

Marcie

donna chopyak <colorsntrees > wrote:

I got the usual RRMS diagnosis. After a year I wastold I'm chronic relapsing and they never really saw acase like mine. I get really bad like doc wanting touse a feeding tube, respirator and a baclofen pump butget about 90 percent back each time. January will be 3years I've been diagnosed. I'm 31 by the way. I triedmany things so far but it is such an individualdisease, you have to I think. No, I had no symptomsbefore my first MRI and was immediately diagnosed fromthe MRI and the symptoms I was having. Feel free toask what I might be able to help with.

[Guest guest]

June, That's a very big deal. I try! Marcie June Kreuzer <parmajak1@...> wrote: Marcie, I have had a few bladder infections and had Penicillin and got over them quickly. I was tested to make sure I VOIDED everything, take time to get every drop out so you don't have more

infections. Re: [low dose naltrexone] Opinions of other therapies Donna, I've

about come to the conclusion that RRMS, SPMS & PPMS really don't mean too much. I can understand that if the Copaxone seems to be keeping a relapse from occuring, you should take it. I'm past that point though, and the recent bladder infections kicked my butt! I can't seem to get any strength back. Stay well! Marcie donna chopyak <colorsntrees > wrote: I got the usual RRMS diagnosis. After a year I wastold I'm chronic relapsing and they never really saw acase like mine. I get really bad like doc wanting touse a feeding tube, respirator and a baclofen pump butget

about 90 percent back each time. January will be 3years I've been diagnosed. I'm 31 by the way. I triedmany things so far but it is such an individualdisease, you have to I think. No, I had no symptomsbefore my first MRI and was immediately diagnosed fromthe MRI and the symptoms I was having. Feel free toask what I might be able to help with.