Re: An opportunity & huge decision

February 11, 2007

Me, I'd go with a known med. I got a grant through NORD for my

Copaxone, and it's made a world of difference to me.

I just see no point in missing out on the approved meds that ARE

standard of care now, in favor of something that isn't.

Feel free to disagree, plenty of people do, but all I can say is I'm

doing a heck of a lot better than the other woman with MS in my

town, the one who doesn't believe in traditional medicine. I do use

complementary ideas - I take fish oil and vitamin D, on the premise

that they can't hurt / might help, and I do Pilates when my body

will cooperate - but I don't personally believe in doing other stuff

*instead* of the standard meds.

There are grant programs for the *regular* medicines. This grant is

not the only one. My Copaxone is $50 every 3 months. I have other

friends who get Avonex free from the company's grant program.

Remember you asked for opinions. When you do that, they may not all

agree with you.

Amy

February 11, 2007

No, that's fine. I DID ask for opinions and I appreciate yours. I've been wavering back and forth on this issue for months but I wanted to try LDN. It does make me feel better but I also want something to stop, or slow, the progression of this stupid disease. I've heard that I could be on Copaxone and LDN at the same time. To be honest with you I am worried about the daily shots. I was on Avonex for 5 years and I quit because I got tired of the shots and 'I felt so good I didn't need it anymore'. (famous last words, hey? lol) The Avonex injections are intramuscular. It didn't hurt after I got it through the skin. I know Copaxone is just under the skin so I worry about it hurting. I feel stupid and silly admitting that. How long have you been on

Copaxone? Sharon Re: An opportunity & huge decision Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me. I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't. Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that

they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds. There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program. Remember you asked for opinions. When you do that, they may not all agree with you. Amy

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February 11, 2007

I agree that, as you call them, *regular* meds DO work of some people. I don't happen to be one of them. I ended up on suicide watch with Rebif, and had extreme injection site reactions and my MS worsened with Copaxone, so not my neuro says there IS nothing they can give me. He approves of me taking LDN, I do so with his knowledge and Blessings.

I am almost totally asymptomatic from MS, most of my problems come from severe scholiosis and the good ol' arthritis that riddles my body and twists my walking. I DO take an arsenal of vitamins.supplements, and they Do help, they're mostly geared toward the pain and inflammation of the Arthritis. The LDN is almost alone in keeping MS at bay, although some do "crossover", like fish oil and oil of evening primrose.

I do remember, or think I do, that Sharon was having some problems with Avonex before?

Now sure...but then again I haven't had my coffee yet...

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

February 11, 2007

Sharon, it was partly the injection site reactions that did my in with Copaxone, so you're right to be concerned...

As for Challis, tell her to just delete the derned emails, come back and start fresh. She'll catch up in no time...we MISS her!!!

And another missing person...Jackie in Oregon, where are ya? OK, I know you're in Oregon...but what's going on, you haven't posted in a bit, either...

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

No, that's fine. I DID ask for opinions and I appreciate yours. I've been wavering back and forth on this issue for months but I wanted to try LDN. It does make me feel better but I also want something to stop, or slow, the progression of this stupid disease. I've heard that I could be on Copaxone and LDN at the same time. To be honest with you I am worried about the daily shots. I was on Avonex for 5 years and I quit because I got tired of the shots and 'I felt so good I didn't need it anymore'. (famous last words, hey? lol) The Avonex injections are intramuscular. It didn't hurt after I got it through the skin. I know Copaxone is just under the skin so I worry about it hurting. I feel stupid and silly admitting that. How long have you been on Copaxone? Sharon

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

Everyone is raving about the all-new Yahoo! Mail beta.

February 11, 2007

lol.trust me.no more spinal taps.lol.the doc at the er said I probly have a

leak,and I said he poked me 5 times,so knowing my luck I have 5 leaks.lol.was a

nice laugh.today I got outa bed thinkn id be better.oh no pain.cannot lift my

head.called UC and they told me I should go the er.ya.if only u didnt have

to wait 10 hrs. To be seen.she did tell me thow that once i told the triage

nurse that they would lay me down.so im debating .should I wait or should I

torture myself in sitting up for only god knows how long till they help me.what

do u think?didnt u get a headache?how long did it last?I guess if its no beter

later i will have to go,I gota get up.havnt had a shower since thurs. Mornin.yes

i know gross! Luckily i dont stink.lol.longest ive ever gone.man even when I had

my kids i was up the same day.feel like I just had a major operation!this bites!

So how r u today?

[wobbletowalk@...] wrote:

I hear ya, Cassy As soon as one thing get's better something else pops up.

I'm glad you are finally feeling a little better and I hope you are even better

today. No more spinal taps, okay?

Sharon

Re: An opportunity & huge decision

Hey sharon.that is great.wernt you talking a wile back about maybe switching?it

is a great oppurtunity. and if the price worries you once the grant is out,you

could contact that AIN website.I know that they could help you with that.Im sure

once you think about it and weigh the pros and cons,you will make the right

choice on what to do.could you go back to LDN if the avonex didnt do a great

job?let me know.I hope you are doing ok.how is challis?is she doing alright?im

gona email her.I get worried when I dont see u guys on for awile.but I know u

just seen her so she is ok.big hugzz to u both.,cassy

[wobbletowalk@ yahoo.com] wrote:

I got a surprise phone call yesterday from someone at (I think) MS Active

Source. He said I have been approved for $4200 in funding to help with my meds

so I can go back on Avonex. He said it's from the Chronic Disease Fund in

Texas. I looked them up and here is their address if anyone....

February 11, 2007

Cassy~I want you to go ASAP--that means immediately to the ER. I had the spinal headache for 3 days--i laid flat, cause i had the same prob. every time i picked my head up bam! But--guess what i got on day#3--pneumonia--from lying flat for too long! Go to ER. Tell them you HAVE to be flat-DR's orders and even if they don't get ya a stretcher, lie down on them chairs in the waiting room to make your point. I'm not kidding. You most likely have a leak, and this has gone on way too long now! hugs, kate Re: An opportunity & huge decision> > > > Hey sharon.that is great.wernt you talking a wile back about > maybe switching?it is a great oppurtunity. and if the price > worries you once the grant is out,you could contact that AIN > website.I know that they could help you with that.Im sure once > you think about it and weigh the pros and cons,you will make the > right choice on what to do.could you go back to LDN if the > avonex didnt do a great job?let me know.I hope you are doing > ok.how is challis?is she doing alright?im gona email her.I get > worried when I dont see u guys on for awile.but I know u just > seen her so she is ok.big hugzz to u both.,cassy> > > > [wobbletowalk@ yahoo.com] wrote:> > I got a surprise phone call yesterday from someone at (I think) > MS Active Source. He said I have been approved for $4200 in > funding to help with my meds so I can go back on Avonex. He > said it's from the Chronic Disease Fund in Texas. I looked them > up and here is their address if anyone....> NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses Yahoo's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless.

Attachment: vcard [not shown]

February 11, 2007

Akiba; the injection site reactions, caused in my own situation, to an allergy to

mannitol, used as an inactive ingredient in the Copaxone, caused me to give it

up, too! Just typing out loud, love,

n RojasRojas5915@...

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

Everyone is raving about the all-new Yahoo! Mail beta.

February 11, 2007

No I didn't have problems with Avonex. I just got tired of doing the shots after 5 years. Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do

that, they may not all agree with you.Amy

February 11, 2007

To be honest with you I am worried about the daily shots. I was on

Avonex for 5 years and I quit because I got tired of the shots

and 'I felt so good I didn't need it anymore'. (famous last words,

hey? lol) The Avonex injections are intramuscular. It didn't hurt

after I got it through the skin. I know Copaxone is just under the

skin so I worry about it hurting. I feel stupid and silly admitting

that. How long have you been on Copaxone?

******

I've been on Copaxone since 10/05 ... almost a year and a half. I

have had zero serious reactions. It does burn upon injection maybe

once a week. Also probably once a week, a spot will choose to become

a lump. Three times I have managed to hit something that made it

bleed noticeably - a bandaid was sufficient, but normally there's no

blood.

Other than that, no negative reactions.

I was in one long flare from 11/04 (initial symptoms proceeding to

dx) til I started on the medicine. On meds, I have honestly been

pretty good. This last week has been UGLY ... normally good = my

legs work at home except they don't like the stairs, but going to

town is going to make them unhappy. this week, my legs didn't work

here either. I was so grateful to wake up this morning and be able

to get them moving! I take the shots hoping I'll be glad in ten

years that I did. ly, for me, I'm way better off than I was two

years ago - even my WORST days now are better than my BEST days then

(on Valium + 3600 mg Neurontin daily at that time, no ABC meds).

The first time I did a shot, it took me 30 minutes, with my neighbor

RN here to help me figure out the auto-injector. I was SCARED. I

HATE needles. Within weeks, it was a matter of minutes daily. I have

a schedule for shots - daily shots means you have to rotate body

sites. For me, I start my *week* on Fridays with right arm, Sat is

left arm, then Sun = right hip, Monday = left hip, Tues = right

thigh, Weds = left thigh, Thurs = tummy, then start over. Initially

I started with top right part of each body part - move down each

week for 4-5 weeks, then start at top of left side and move down.

It's honestly less complicated than it sounds ... I found the *mark

the spots* charts more confusing than helpful.

Do I know if this will *fix* it? Nope. However, I believe in hedging

my bets. The other woman in town started with MS back when there

wasn't anything. I figure I'm lucky enough to live when they do have

medications that are documented to help ... I intend to make use of

them. I have no insurance, but was able to sort out grants. The

Copaxone one comes through NORD, and is income/asset related (aka,

you have to fill out paperwork and send copies of bank statements,

etc) but it was not as hard as I thought it would be.

And if you can do LDN (which you are interested in / is helping you)

AND Copaxone ... terrific. I'm not opposed to alternative things,

I'm just opposed to using them *instead of*. And if one more person

tells me if I just prayed better / more I'd be healed, I swear I

will deck them.

Amy

February 11, 2007

thanks kate.I actually went to the er yesterday but they couldnt do the patch

cuz they didnt know wer to put it.I spoke to ucd yesterday and today,i decided

if this evening it isnt gone I will go.I hesitate cuz the er i will have to get

the patch at is a county hospital and is always full.they said the triage would

take care of me when I go.I feel somewhat better if i take the meds they gave me

but it has been way to long.4 days now! The neuro i spoke to yesterday told me

to lay and drink lots of fluids including caffeine.I just worry about the trip

down there.it is a half hour,and i will have to sit up to get in there.yesterday

we went to the local er and by the time i got there i was screaming and

crying,and then started vomiting.once I layd down it eased up.but all that

really toke its toll on me.they said nothing bad would happen,and eventually the

leak would heal,but if later it isnt gone some i will go.how long does it take

to heal on its own?does it go away

immediately after they do the patch?hugz,casy

[katelloydkidz@...] wrote:

Cassy~I want you to go ASAP--that means immediately to the ER. I had the spinal

headache for 3 days--i laid flat, cause i had the same prob. every time i picked

my head up bam! But--guess what i got on day#3--pneumonia--from lying flat for

too long! Go to ER. Tell them you HAVE to be flat-DR's orders and even if they

don't get ya a stretcher, lie down on them chairs in the waiting room to make

your point. I'm not kidding. You most likely have a leak, and this has gone on

way too long now! hugs, kate

Re: An opportunity & huge decision

>

> wow.that is alot of emails.lol.I would be overwelmed

> to.glad to know shes doin good,bet shes pooped from bein mommy

> taxi. well,they gave me some norco,and they have seemed to

> help.missed my mornin and afternoon meds due to the er and

> vomiting.I feel somewhat better.thanks for all the prayers.they

> are really helping.man, is it just me,or does it seem like one

> thing after another for everyone else?life goes on,im hoping for

> a recovery if i ever get dx'd.

>

> [wobbletowalk@ yahoo.com] wrote:

>

> Hi Cassy:

>

> I'm so sorry you're having such a tough time and I hope this is

> over for you soon. Challis is doing good. She went to the MS

> group mail several days ago but there were 1300 emails and she

> closed it again. We talk so much on here and she is

> overwhelmed. She can't bring herself to just delete email.

> She's been busy with her....

February 11, 2007

good advice. I hadn't even thought of pneumonia! Re: An opportunity & huge decision> > > > Hey sharon.that is great.wernt you talking a wile back about > maybe switching?it is a great oppurtunity. and if the price > worries you once the grant is out,you could contact that AIN > website.I know that they could help you with that.Im sure once > you think about it and weigh the pros and cons,you will make the > right choice on what to do.could you go back to LDN if the >

avonex didnt do a great job?let me know.I hope you are doing > ok.how is challis?is she doing alright?im gona email her.I get > worried when I dont see u guys on for awile.but I know u just > seen her so she is ok.big hugzz to u both.,cassy> > > > [wobbletowalk@ yahoo.com] wrote:> > I got a surprise phone call yesterday from someone at (I think) > MS Active Source. He said I have been approved for $4200 in > funding to help with my meds so I can go back on Avonex. He > said it's from the Chronic Disease Fund in Texas. I looked them > up and here is their address if anyone....> NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses Yahoo's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if

we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless.

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February 11, 2007

why thow?how could i just get phnemonia like that?from laying to much?that

scares me

[wobbletowalk@...] wrote:

good advice. I hadn't even thought of pneumonia!

Re: An opportunity & huge decision

>

> wow.that is alot of emails.lol.I would be overwelmed

> to.glad to know shes doin good,bet shes pooped from bein mommy

> taxi. well,they gave me some norco,and they have seemed to

> help.missed my mornin and afternoon meds due to the er and

> vomiting.I feel somewhat better.thanks for all the prayers.they

> are really helping.man, is it just me,or does it seem like one

> thing after another for everyone else?life goes on,im hoping for

> a recovery if i ever get dx'd.

>

> [wobbletowalk@ yahoo.com] wrote:

>

> Hi Cassy:

>

> I'm so sorry you're....

February 11, 2007

I might have been that, we've not done any research on it, I know the bee stings also caused an extreme reaction, maybe it's just me?

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

Akiba; the injection site reactions, caused in my own situation, to an allergy to

mannitol, used as an inactive ingredient in the Copaxone, caused me to give it

up, too! Just typing out loud, love,

n RojasRojas5915Comcast (DOT) net

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

Everyone is raving about the all-new Yahoo! Mail beta.

February 11, 2007

I bet!

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

No I didn't have problems with Avonex. I just got tired of doing the shots after 5 years.

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

February 11, 2007

I've had either 8 or 9 pneumonias in the last 10 yrs or so; the one after the spinal the most recent...So I am real um...what's the word...geez, brain burp...i just can't think of it...boy i feel like a dope...i have a low resistance--and weakened lungs, and i guess just a weak immune system...Pneumonia wouldn't just hit the average person...see i'm not average! ROFLMHO!! oops, i can't get back up!!! help!!! ya know what stinks about laughin or smilin--the horrid TN pain--that stuff triggers me bad! ok, waitin on Chinese! delivery man hubby...you know what Confuscious say--man with forked tongue....should never...ever...kiss balloon!! hugs, kate Re: An opportunity & huge decision> > > > > > > > > > > > > > > > > > > > > > > > > > > > wow.that is alot of emails.lol.I would be overwelmed > > to.glad to know shes doin good,bet shes pooped from bein mommy > > taxi. well,they gave me some norco,and they have seemed to > > help.missed my mornin and afternoon meds due to the er and > > vomiting.I feel somewhat better.thanks for all the > prayers.they > > are really helping.man, is it just me,or does it seem like one > > thing after another for everyone else?life goes on,im hoping > for > > a recovery if i ever get dx'd.> > > > > > > > [wobbletowalk@ yahoo.com] wrote:> > > > Hi Cassy:> > > > > > > > I'm so sorry you're....> NOTE: Next time you want to google something, use: Goodsearch.com. There is an account set up for Grace Fellowship and all searches using Goodsearch (which uses Yahoo's search engine) will result in about one cent being donated to Grace Fellowship. Not much, but it can become significant if we and others we tell consistently use Goodsearch for all our searches. For example, 100 people using Goodsearch for two searches a day will net us $730.00 a year. When you go to the site just type in Grace Fellowship Orthodox Presbyterian Church as the benefactor. This is right below the search bar. You can also change the benefactor with each search and help other non-profits of your choice (if they have an account). Thanks for your consideration and God bless.

Attachment: vcard [not shown]

February 11, 2007

Amy:LOL... I got a chuckle out the last line in your post. I have the same reaction to the idea than if I would just walk more I would feel better. My oldest brother is of that mindset. See now... all of us MSers just need to forget we have MS and just 'walk it off'. If it was a matter of prayer we would all have been healed ages ago. Thanks for telling me your experiences with Copaxone. What other meds are you on now? When were you diagnosed and how long had you had symptoms? I'm just trying to get a feel for how your MS presented itself and how you are doing now. And I appreciate your viewpoint on the CRAB-T drugs. How's the weather where you are and how does it affect you?Sharon Re: An opportunity & huge decision To be honest with you I am worried about the daily shots. I was on Avonex for 5 years and I quit because I got tired of the shots and 'I felt so good I didn't need it anymore'. (famous last words, hey? lol) The Avonex injections are intramuscular. It didn't hurt after I got it through the skin. I know Copaxone is just under the skin so I worry about it hurting. I feel stupid and silly admitting that. How long have you been on Copaxone? ****** I've been on Copaxone since 10/05 ... almost a year and a half. I have had zero serious reactions. It does burn upon injection maybe once a week.

Also probably once a week, a spot will choose to become a lump. Three times I have managed to hit something that made it bleed noticeably - a bandaid was sufficient, but normally there's no blood. Other than that, no negative reactions. I was in one long flare from 11/04 (initial symptoms proceeding to dx) til I started on the medicine. On meds, I have honestly been pretty good. This last week has been UGLY ... normally good = my legs work at home except they don't like the stairs, but going to town is going to make them unhappy. this week, my legs didn't work here either. I was so grateful to wake up this morning and be able to get them moving! I take the shots hoping I'll be glad in ten years that I did. ly, for me, I'm way better off than I was two years ago - even my WORST days now are better than my BEST days then (on Valium + 3600 mg Neurontin daily at that time, no ABC meds). The

first time I did a shot, it took me 30 minutes, with my neighbor RN here to help me figure out the auto-injector. I was SCARED. I HATE needles. Within weeks, it was a matter of minutes daily. I have a schedule for shots - daily shots means you have to rotate body sites. For me, I start my *week* on Fridays with right arm, Sat is left arm, then Sun = right hip, Monday = left hip, Tues = right thigh, Weds = left thigh, Thurs = tummy, then start over. Initially I started with top right part of each body part - move down each week for 4-5 weeks, then start at top of left side and move down. It's honestly less complicated than it sounds ... I found the *mark the spots* charts more confusing than helpful. Do I know if this will *fix* it? Nope. However, I believe in hedging my bets. The other woman in town started with MS back when there wasn't anything. I figure I'm lucky enough to live when they do have

medications that are documented to help ... I intend to make use of them. I have no insurance, but was able to sort out grants. The Copaxone one comes through NORD, and is income/asset related (aka, you have to fill out paperwork and send copies of bank statements, etc) but it was not as hard as I thought it would be. And if you can do LDN (which you are interested in / is helping you) AND Copaxone ... terrific. I'm not opposed to alternative things, I'm just opposed to using them *instead of*. And if one more person tells me if I just prayed better / more I'd be healed, I swear I will deck them. Amy

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February 11, 2007

Thanks for telling me your experiences with Copaxone. What other

meds are you on now? When were you diagnosed and how long had you

had symptoms? I'm just trying to get a feel for how your MS

presented itself and how you are doing now. And I appreciate your

viewpoint on the CRAB-T drugs.

How's the weather where you are and how does it affect you?

*****

Sharon - okay, here's the long version!

I'm a 39 year old mom of 3. In the summer of 2003, I started having

some bowel issues, but assumed they were related to simply having had

babies. By summer of 2004, these issues were a bit worse, but

honestly I wasn't paying attention. (Note my oldest child has big

medical issues, which meant that worrying about ME was low on the

list ... and my youngest child had some similar bowel issues,

different cause, at same time, and I was focused on fixing her, ended

up forgetting mine weren't *normal*.)

I was healthy. I was walking 4 miles / day on the treadmill, had

finally lost all the weight-we-claim-is-baby-weight. My kids were

just turned 6, 8.5, and 10.5. Then on 11/11/04, my world as I knew it

was gone. I saw the doctor earlier that week for tendinitis ... opted

to hold off on cortisone shot. Two days later, at night, I suddenly

had tremors, starting at my right food, going up my right side, over

to left side adn down. Basically BIG impressive involuntary jerking.

Went on for an hour, every 2-3 minutes. Then stopped.

The next day, hubby was home. Everything was fine. Then suddenly, I

was jerking ALL OVER, entire body, and I couldn't speak. Hubby hauled

me to local clinic, where they IV Valium'd me down and got neuro

referral going. My voice was gone about 2-3 hours total, an hour

after the valium started. I went home with a bottle of valium. I saw

the neuro, was sent for MRI. MRI was negative. Subsequent spinal tap

was positive (though we all know that doesn't *prove* MS), and

bloodwork ruled out other causes for the oligoclonal banding.

Bloodwork had the suggestive proteins - I forget details by now.

Neuro by then had me on Neurontin to help with the jerking - it did

help *some*, but didn't make it go away. Neuro said it was either MS

or myoclonic epilepsy, to go get EEG. EEG was negative, but I opted

not to return to neuro as part of that same appt had been SSI eval,

and he walked in the room and the first words out of his mouth were

*what's with the mouth thing* (trembling) and *can't you control

that*. Given that by that time it had been the better part of 6

months, and NO ONE had ever said a WORD (and I know people could see

it) I thought that was extremely rude. On top of that he didn't have

me do heel-toe walking or stand up w/ eyes closed (neither of which I

can do), and argued with me that I shouldn't apply for SSI since I

had been home with kids, not employed (um, this isn't SSDI, this is

SSI, 2 separate programs...)

Went to my local GP after EEG was negative. He was willing to

prescribe any of the standard meds. I did at that point, due to the $

of the standard meds, investigate LDN. ly, my GP wasn't willing

to prescribe that, and the only doctor in Boise that does, to my

knowledge, requires patients to be off of the *standard* meds. (This

is per a woman I met at an MSSA group event who is on LDN, has had MS

for the better part of 60 years, and I will give her looks to be

doing better than I am.) For this whole time, I couldn't do stairs

forwards 2/3 of the time - figured out I could do them if I went

backwards, different nerves apparently.

I found resources for a grant for Copaxone - picked this one because

of the lack of side effects (family hx of depression / mental

illness, so wasn't excited re med w/ depression as a listed side

effect) and because it came with an auto-injector (seriously, this

was a HUGE issue for me - I could NOT handle sticking the *actual*

needle in me).

At the time I started Copaxone, I was using a walker sometimes at

home, and definitely away from home. Within a few months on Copaxone,

I was able to go OFF the Neurontin (jerking is a side effect, and by

that point Neurontin was causing more jerking than it was fixing) and

was doing much better. Now note my *much better* is a comparison to

how I WAS ... not to other MSer's REality is I haven't driven since

11/04, and I'm not going to be able to. I still jerk - more some

times than others - and frankly I get too tired to handle it. By last

summer I was able to walk on the treadmill again - for maybe 20-30

minutes. I could do stairs forwards, although most of hte time I have

to lean on the wall and do one-foot-at-a-time navigation.

Now, I still have times - this week was one - where I need the

walker, and/or the touch-the-counter-now-the-wall method of

navigating. I seriously want to move - our bedroom is upstairs, and

it's HARD for me to do stairs.

I don't generally have eye issues - one small floatie that's always

there, two brief (under 5 minutes) episodes of feels-like-tree-trunk-

in-eye, and one episode of BIG floatie (as in, I gave up on reading

and went to bed). Just started having shooting-wire-making-sparks

last night - in foot, then in shoulder - that HURT. I used to -pre-

Copaxone - have the horrible burning, must lay flat and not move,

pain. That used to be 2-3 x weekly, for the whole day, and is gone. I

do have intermittent issues with my fingers, adn my elbow doesn't

work for months at a time. (Cortisone shot #1 worked, but I had bad

rxn to cortisone shot #2 and am now leery of that.) My brain is fine -

I often mix words up, but I can generally find synonyms or describe

what I mean. It's less common now for me to just *say* the wrong

word - now I sort of recognize that I can't find the word.

Is Copaxone the answer for everyone with MS? Nope. For me, it's been

positive, and I am absolutely better off than without it.

I'm still in process with SSI - my GP just wrote a kick-butt letter

based on the template from the MSAA. My 2nd denial stated that I

didn't qualify becasue my " arms and legs work normally in between the

times that they don't " . I hope to qualify since that would give me

insurance, maybe access to a neurologist who actually had people

skills.

As for weather - I live in the mountains of Idaho, an hour north of

Boise. Cold WIND sets me off ... not so much just the temp, but if I

get blown on. High heat bothers me too. I handle both by the

avoidance method ...

And as for *walk it off* ... I do think we need to do what we can. I

got a beginner's Pilates DVD that I'm finding helpful several months

back. I want to try to maintain strength & flexibility as much as I

can. However, I have to do it at *my* level. I do believe that when

I'm having better days, I enjoy them and do what I can. However, on

worse days, I'm not capable of *doing more*, so it's not as if I'm

choosing not to, I can't. And yep, you get that!

February 11, 2007

I did the bee venom therapy for a year and I know a bit about it. I wrote an article for New Mobility magazine many years ago. I don't know what the issue is. Kathi

I might have been that, we've not done any research on it, I know the bee stings also caused an extreme reaction, maybe it's just me?

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

Akiba; the injection site reactions, caused in my own situation, to an allergy to

mannitol, used as an inactive ingredient in the Copaxone, caused me to give it

up, too! Just typing out loud, love,

n RojasRojas5915Comcast (DOT) net

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

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February 12, 2007

I wish I had the time and energy to read this....I know it's probably good...Rule of thumb is.........How you go the first six years is about the speed you can expect it to go.

Re: An opportunity & huge decision

Thanks for telling me your experiences with Copaxone. What other meds are you on now? When were you diagnosed and how long had you had symptoms? I'm just trying to get a feel for how your MS presented itself and how you are doing now. And I appreciate your viewpoint on the CRAB-T drugs. How's the weather where you are and how does it affect you?*****Sharon - okay, here's the long version!I'm a 39 year old mom of 3. In the summer of 2003, I started having some bowel issues, but assumed they were related to simply having had babies. By summer of 2004, these issues were a bit worse, but honestly I wasn't paying attention. (Note my oldest child has big medical issues, which meant that worrying about ME was low on the list ... and my youngest child had some similar bowel issues, different cause, at same time, and I was focused on fixing her, ended up forgetting mine weren't *normal*.)I was healthy. I

was walking 4 miles / day on the treadmill, had finally lost all the weight-we-claim- is-baby-weight. My kids were just turned 6, 8.5, and 10.5. Then on 11/11/04, my world as I knew it was gone. I saw the doctor earlier that week for tendinitis ... opted to hold off on cortisone shot. Two days later, at night, I suddenly had tremors, starting at my right food, going up my right side, over to left side adn down. Basically BIG impressive involuntary jerking. Went on for an hour, every 2-3 minutes. Then stopped.The next day, hubby was home. Everything was fine. Then suddenly, I was jerking ALL OVER, entire body, and I couldn't speak. Hubby hauled me to local clinic, where they IV Valium'd me down and got neuro referral going. My voice was gone about 2-3 hours total, an hour after the valium started. I went home with a bottle of valium. I saw the neuro, was sent for MRI. MRI was negative. Subsequent spinal tap was

positive (though we all know that doesn't *prove* MS), and bloodwork ruled out other causes for the oligoclonal banding. Bloodwork had the suggestive proteins - I forget details by now. Neuro by then had me on Neurontin to help with the jerking - it did help *some*, but didn't make it go away. Neuro said it was either MS or myoclonic epilepsy, to go get EEG. EEG was negative, but I opted not to return to neuro as part of that same appt had been SSI eval, and he walked in the room and the first words out of his mouth were *what's with the mouth thing* (trembling) and *can't you control that*. Given that by that time it had been the better part of 6 months, and NO ONE had ever said a WORD (and I know people could see it) I thought that was extremely rude. On top of that he didn't have me do heel-toe walking or stand up w/ eyes closed (neither of which I can do), and argued with me that I shouldn't apply for SSI since I

had been home with kids, not employed (um, this isn't SSDI, this is SSI, 2 separate programs...)Went to my local GP after EEG was negative. He was willing to prescribe any of the standard meds. I did at that point, due to the $ of the standard meds, investigate LDN. ly, my GP wasn't willing to prescribe that, and the only doctor in Boise that does, to my knowledge, requires patients to be off of the *standard* meds. (This is per a woman I met at an MSSA group event who is on LDN, has had MS for the better part of 60 years, and I will give her looks to be doing better than I am.) For this whole time, I couldn't do stairs forwards 2/3 of the time - figured out I could do them if I went backwards, different nerves apparently.I found resources for a grant for Copaxone - picked this one because of the lack of side effects (family hx of depression / mental illness, so wasn't excited re med w/ depression as

a listed side effect) and because it came with an auto-injector (seriously, this was a HUGE issue for me - I could NOT handle sticking the *actual* needle in me).At the time I started Copaxone, I was using a walker sometimes at home, and definitely away from home. Within a few months on Copaxone, I was able to go OFF the Neurontin (jerking is a side effect, and by that point Neurontin was causing more jerking than it was fixing) and was doing much better. Now note my *much better* is a comparison to how I WAS ... not to other MSer's REality is I haven't driven since 11/04, and I'm not going to be able to. I still jerk - more some times than others - and frankly I get too tired to handle it. By last summer I was able to walk on the treadmill again - for maybe 20-30 minutes. I could do stairs forwards, although most of hte time I have to lean on the wall and do one-foot-at- a-time navigation.Now, I still

have times - this week was one - where I need the walker, and/or the touch-the-counter- now-the-wall method of navigating. I seriously want to move - our bedroom is upstairs, and it's HARD for me to do stairs.I don't generally have eye issues - one small floatie that's always there, two brief (under 5 minutes) episodes of feels-like-tree- trunk-in-eye, and one episode of BIG floatie (as in, I gave up on reading and went to bed). Just started having shooting-wire- making-sparks last night - in foot, then in shoulder - that HURT. I used to -pre-Copaxone - have the horrible burning, must lay flat and not move, pain. That used to be 2-3 x weekly, for the whole day, and is gone. I do have intermittent issues with my fingers, adn my elbow doesn't work for months at a time. (Cortisone shot #1 worked, but I had bad rxn to cortisone shot #2 and am now leery of that.) My brain is fine -I often mix words up, but I can

generally find synonyms or describe what I mean. It's less common now for me to just *say* the wrong word - now I sort of recognize that I can't find the word.Is Copaxone the answer for everyone with MS? Nope. For me, it's been positive, and I am absolutely better off than without it.I'm still in process with SSI - my GP just wrote a kick-butt letter based on the template from the MSAA. My 2nd denial stated that I didn't qualify becasue my "arms and legs work normally in between the times that they don't". I hope to qualify since that would give me insurance, maybe access to a neurologist who actually had people skills.As for weather - I live in the mountains of Idaho, an hour north of Boise. Cold WIND sets me off ... not so much just the temp, but if I get blown on. High heat bothers me too. I handle both by the avoidance method ... And as for *walk it off* ... I do think we need to do what we

can. I got a beginner's Pilates DVD that I'm finding helpful several months back. I want to try to maintain strength & flexibility as much as I can. However, I have to do it at *my* level. I do believe that when I'm having better days, I enjoy them and do what I can. However, on worse days, I'm not capable of *doing more*, so it's not as if I'm choosing not to, I can't. And yep, you get that!

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February 12, 2007

There is something called Bees in a Bottle, costs $18 for a jar that is about a 1 month supply (very reasonable considering the work that goes into it), I am going to try that as soon as I can, I'm hoping that this method of delivering the venom won't affect me the way the stingers did, as I got real relief from the therapy itself...

We did only one sting on my bad knee, and while the pain lessened considerably, the sting site swelling did not abate for almost a month and the redness took even longer then that to go away. The stings on my back left actual bruises that also lasted for weeks...

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

Akiba; the injection site reactions, caused in my own situation, to an allergy to

mannitol, used as an inactive ingredient in the Copaxone, caused me to give it

up, too! Just typing out loud, love,

n RojasRojas5915Comcast (DOT) net

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

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February 12, 2007

Perhaps you are allergic to bees? You should consider having a test to see. My son is allergic to bees and has to carry and Anakit or Epipen in case he is stung and is not within 20 minutes of emergency care. He didn't have a reaction the first time he was stung or even the second time. But then he developed dangerous swelling on his face and in his throat. hugs)Sharon Re: An opportunity & huge decision Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard

meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy Everyone is raving about the all-new Yahoo! Mail beta. IncrediMail! Click Here!" src="cid:3.3897648157@..." border="0">

February 12, 2007

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We did test, and I'm not. I DO have an epipen, just in case...because I don't know if Robbin is or not, since he's never been stung.

Peace and Blessings~*~ Akiba ~*~Pragmatic Visionary & Eternal Optimist! http://yodamamma.blogspot.com/ http://www.solay-twinflames.com

-- Re: Re: An opportunity & huge decision

Perhaps you are allergic to bees? You should consider having a test to see. My son is allergic to bees and has to carry and Anakit or Epipen in case he is stung and is not within 20 minutes of emergency care. He didn't have a reaction the first time he was stung or even the second time. But then he developed dangerous swelling on his face and in his throat. hugs)Sharon

Re: An opportunity & huge decision

Me, I'd go with a known med. I got a grant through NORD for my Copaxone, and it's made a world of difference to me.I just see no point in missing out on the approved meds that ARE standard of care now, in favor of something that isn't.Feel free to disagree, plenty of people do, but all I can say is I'm doing a heck of a lot better than the other woman with MS in my town, the one who doesn't believe in traditional medicine. I do use complementary ideas - I take fish oil and vitamin D, on the premise that they can't hurt / might help, and I do Pilates when my body will cooperate - but I don't personally believe in doing other stuff *instead* of the standard meds.There are grant programs for the *regular* medicines. This grant is not the only one. My Copaxone is $50 every 3 months. I have other friends who get Avonex free from the company's grant program.Remember you asked for opinions. When you do that, they may not all agree with you.Amy

Everyone is raving about the all-new Yahoo! Mail beta.

February 12, 2007

You did miss out then because Amy wrote a great post. I'm in the process of answering her now. Sharon Re: An opportunity & huge decision