Re: An opportunity & huge decision

[Guest guest]

Hi Amy:You wrote a nice, long version! I enjoyed reading it and learning more about you. So you started off with bowel issues? That's a subject people tend to not talk about but it's a fact of life for many MSers. Do you mean constipation? I've had constipation for years and I've tried to take care of it in all kinds of natural ways. I don't take laxatives because I'm afraid of causing more problems. But if I eat a lot of citrus fruit, or carrots, or salad I'm usually okay. When I said my brother believes in "walking it off" I mean like when someone has an injury and they are told to walk it off, doing more damage than if they had listened to their body. My brother has the attitude that MS is no big deal. He has an adult son with Muscular Dystrophy.

Greg has done great for most of his life but now needs more help getting up when sitting. I've heard my brother say he thinks Greg is pretending to get attention. Geez.... If he would say that about his own very disabled son then what does he think of me? He says almost every illness/disease (pointed look in my direction) could be cured by hard work. lol I hope he never has to find out for himself. The wind blowing on you sets you off? Interesting. What about hot weather? It does get hot in Boise, doesn't it? Sharon 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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[Guest guest]

So you started off with bowel issues? That's a subject people tend

to not talk about but it's a fact of life for many MSers. Do you

mean constipation?

****

Um, not particularly, or at least not in the sense *I* would define

it. *hanging head in embarrassment*. I mean sometimes having to

physically push fecal matter out - it's like it doesn't all want to

come out. It's not that I can't poop, and it's not that it's too

hard, but somehow I have to actually physically force it out.

Otherwise it will simply stay there, annoying me.

It also means sometimes having IMMEDIATE diarrhea - as in, in my

underwear if I don't move it NOW. (This was also going on with

kidlet #3 - in her case, she forgets to poop, then creates

constipation, then diarrhea explodes around. A *poop calendar*

worked wonders for her. Won't fix me, unfortunately. However, this

is why I didn't recognize this as a problem initially - took a month

for me to decide we didn't both just have GI viruses, and then I was

focused on getting HER fixed, nad in the meantime just got used to

my *new normal*.) The diarrhea resolved when I removed wheat from my

diet (was trying a version of MS Best Bet diet - easy for me since

my oldest child is allergic to all top 8+ so I already know how to

cook *without*.) I also removed dairy - shortly before that - when I

started having frequent migraines.

I also sometimes end up peeing all over my hand when I'm trying to

get poop out - even though I've already FINISHED peeing, I thought.

And no, this hasn't been discussed with the doctor. I have to see

him in town, and it's a small town. (Dying now.)

> The wind blowing on you sets you off? Interesting. What about

hot weather? It does get hot in Boise, doesn't it?

***

Yes, cold wind ABSOLUTELY sets me off. Makes everything go weak,

makes me tippy.

We live an hour north of Boise in the mountains. It's only hot for

July/August, generally. (Maybe nudging 100, not usually.) I just

stay in. Last year had one time I was working in the yard - had done

the same thing the day before and was FINE - and suddenly had NO

strength. All I could do to make it in the house, and was down x 2

days. Also made hte mistake of going with the kids on the bus to the

library one time - involves 1/2 mile walk to the corner, which was

hard in the morning, nearly impossible when we came home at

lunchtime. Won't do that again. (Weekly library bus in summertime.)

I do have a cooling neck thing - the last time I went somewhere in

the summer (friend took us to & exhibit at history

museum) I kept re-wetting that, and it really did help. I was dead

by the end of the day, and I used the walker all day and sat all

that I could. It wasn't easy, but it was very nice to get to do a

field trip with the kids again. We homeschool, and one of the things

I miss most is being able to take the kids on field trips.

And for what it's worth, I'm having a fabulous day. After a week of

barely being able to shuffle, and then two days of walking like a

drunken sailor, it's awfully nice to have my legs happy again.

Today, they work.

Amy

[Guest guest]

Sharon, first do not BLAME yourself! (say I who usually do!), love; this is, over-all, a tragic

situation, and some people just cannot cope with very much! Love to you!

n Rojas5915@...

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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[Guest guest]

You sound just like my high blood prssure patients who stop taking their BP meds because they felt soo good. They felt soo good BECAUSE THE MEDICINE WAS WORKING> I went to my specialist neuro in Dallas on the 7th and the did a MRI of my c and t spine. Neuro called me next day and said no plaques and she still wanted me to see the MS specialist on my scheduled appt because she thought it was MS but she wanted the other to make the call. The other thing she called about was my thyroid was enlarged on the MRI and I needed to see a general practice MD before I came back to them. On Thursday I had a ultrasound on my thyroid and Friday the Nurse called me and told me I had an adenoma but could not rule out neoplasm on my thyroid. So on Tuesday I go and have the T124 test done-you swollow or they inject radioactive material and your thyroid absorbs it then they take xrays of it and it shoud show if is cancer. Even if it isn't cancer at times

they have to remove growths on the thyroid because it affects the body. So the way I figure is God had me have an exacerbation so I would have a MRI of my spine because the last one done was in April and my thyroid was normal then. So I truly beleive that is was for a reason So prayers everyone. As for recovery from the exacerbation, I was able to take out the catheter yesterday and start in and out cathing, so far I haven't had to use the wheelchair in the last few days, been using the walker, and today I used my cane. So little by little I'm getting there. My neuro wanted me to apply for my short term disability from work. The question I have is even if I recover from this one, I can't do floor nursing,so if my neuro is willing to write me as disabled, shouldn't I go on and apply for my SSI disabilty, I mean while I have an MD that willing to document my disability? ' in

TexasSharon Marsden wrote: 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 <!--[endif]--> 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.

[Guest guest]

Hey .You should definetly apply for disability.so at least you will have a

descent income wile you recover,and see were things go.I am glad you are doing

better.that is great to hear.I have been thinking of you and praying for

you.keep us posted.many hugs.cassy

[dixmstx@...] wrote:

You sound just like my high blood prssure patients who stop taking their BP meds

because they felt soo good. They felt soo good BECAUSE THE MEDICINE WAS WORKING>

I went to my specialist neuro in Dallas on the 7th and the did a MRI of my c

and t spine. Neuro called me next day and said no plaques and she still wanted

me to see the MS specialist on my scheduled appt because she thought it was MS

but she wanted the other to make the call. The other thing she called about was

my thyroid was enlarged on the MRI and I needed to see a general practice MD

before I came back to them. On Thursday I had a ultrasound on my thyroid and

Friday the Nurse called me and told me I had an adenoma but could not rule out

neoplasm on my thyroid. So on Tuesday I go and have the T124 test done-you

swollow or they inject radioactive material and your thyroid absorbs it then

they take xrays of it and it shoud show if is cancer. Even if it isn't cancer at

times they have to remove growths on the thyroid because it affects the body.

So the way I figure is God had me have an exacerbation so I would have a MRI

of my spine because the last one done was in April and my thyroid was normal

then. So I truly beleive that is was for a reason

So prayers everyone. As for recovery from the exacerbation, I was able to take

out the catheter yesterday and start in and out cathing, so far I haven't had to

use the wheelchair in the last few days, been using the walker, and today I used

my cane. So little by little I'm getting there. My neuro wanted me to apply for

my short term disability from work. The question I have is even if I recover

from this one, I can't do floor nursing,so if my neuro is willing to write me as

disabled, shouldn't I go on and apply for my SSI disabilty, I mean while I have

an MD that willing to document my disability?

' in Texas

Sharon Marsden wrote:

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

<!--[endif]-->

Re: An opportunity & huge decision

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

[Guest guest]

Hey Amy, I have tremors too. They start when I'm trying to do something that I have problems doing or when I'm tired. They start in my right arm and head then will spread to my whole body and it's extreme jerking. I'm on clonazepam 0.5 3 times a day. My specialist neuro called them psychogenic tremors because they didn't fit in a class, seems to be forgetting that you can have tremors with MS and they do not follow a pattern they are different with every patient. I have alot of nerve pain and have been on cymbalta. My big insult by my first neuro is he said it was all psychosomatic and I needed to see a Psychiatrist. Boy, that really explains why I can't urinate. I had 1 band and you have to have 2 bands for your CSF to be pos. Just like I only have one lesion. But I have had 6 documented exacerbations now with the last requiring a 7 day hospital stay so I hope they'll quit playing it safe and put me on something. in

texas By the way, I have a 13.4 yr old boy entering adolescence and he is ADD and OCD with AUtism traits and I have a precocious 6 yr old girl that thinks she is 20.Amy Hugon wrote: 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!

[Guest guest]

Watch it...these may be allergic reactions to the bee venom and each time you get one it will be worse 'Akiba wrote: 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 Everyone is raving about the all-new Yahoo! Mail beta. No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.17.30/674 - Release Date: 2/7/2007 3:33 PM

[Guest guest]

,

Lots of positive thoughts coming your way.

Hugs

nne

Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlBreastCancerStories.comhttp://www.breastcancerstories.com/content/view/433/161/Angel Feather Loomerwww.angelfeatherloomer.blogspot.comCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.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

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

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.412 / Virus Database: 268.18.1/691 - Release Date: 2/17/2007

[Guest guest]

I know the feeling....I was trying to tell a dr I've known for years that I take a stool softener twice a day to contereact all the meds side effects but I just can't have a bowel movement. I'll feel like I need to, but nothing. Or I'll strain and atrin and thing I've had this HUGE bmand it's a piece the size of a milk dud.(Sorry for the comparison) I told him I didn't want to become dependant on laxatives so he started me on prescription Miralax It's a prescription drug that is made with glyceron like your glygerin suppositories and you mix it with a drink once a day. Haven't noticed a change yet but at least I'm having BM's while in th hospital I could not have one. Also couold not urinate and since my left arm was numb couldn't self cath so had to wear a catheter for three weeks. 'Amy Hugon wrote: So you started off with bowel issues? That's a subject people tend to not talk about but it's a fact of life for many MSers. Do you mean constipation? ****Um, not particularly, or at least not in the sense *I* would define it. *hanging head in embarrassment*. I mean sometimes having to physically push fecal matter out - it's like it doesn't all want to come out. It's not that I can't poop, and it's not that it's too hard, but somehow I have to actually physically force it out. Otherwise it will simply stay there, annoying me.It also means sometimes having IMMEDIATE diarrhea

- as in, in my underwear if I don't move it NOW. (This was also going on with kidlet #3 - in her case, she forgets to poop, then creates constipation, then diarrhea explodes around. A *poop calendar* worked wonders for her. Won't fix me, unfortunately. However, this is why I didn't recognize this as a problem initially - took a month for me to decide we didn't both just have GI viruses, and then I was focused on getting HER fixed, nad in the meantime just got used to my *new normal*.) The diarrhea resolved when I removed wheat from my diet (was trying a version of MS Best Bet diet - easy for me since my oldest child is allergic to all top 8+ so I already know how to cook *without*.) I also removed dairy - shortly before that - when I started having frequent migraines. I also sometimes end up peeing all over my hand when I'm trying to get poop out - even though I've already FINISHED peeing, I thought. And no, this

hasn't been discussed with the doctor. I have to see him in town, and it's a small town. (Dying now.)> The wind blowing on you sets you off? Interesting. What about hot weather? It does get hot in Boise, doesn't it? ***Yes, cold wind ABSOLUTELY sets me off. Makes everything go weak, makes me tippy. We live an hour north of Boise in the mountains. It's only hot for July/August, generally. (Maybe nudging 100, not usually.) I just stay in. Last year had one time I was working in the yard - had done the same thing the day before and was FINE - and suddenly had NO strength. All I could do to make it in the house, and was down x 2 days. Also made hte mistake of going with the kids on the bus to the library one time - involves 1/2 mile walk to the corner, which was hard in the morning, nearly impossible when we came home at lunchtime. Won't do that again. (Weekly library bus in summertime.) I do have a cooling

neck thing - the last time I went somewhere in the summer (friend took us to & exhibit at history museum) I kept re-wetting that, and it really did help. I was dead by the end of the day, and I used the walker all day and sat all that I could. It wasn't easy, but it was very nice to get to do a field trip with the kids again. We homeschool, and one of the things I miss most is being able to take the kids on field trips.And for what it's worth, I'm having a fabulous day. After a week of barely being able to shuffle, and then two days of walking like a drunken sailor, it's awfully nice to have my legs happy again. Today, they work.Amy

[Guest guest]

Where was their surgeries performed? My husbands bottom of his esophagis(last 6 inches is dead) and he will evntually need surgery to take small bowel and place it were his esophagus is but the surgeon I used to work for said not to have the surgery until he couldn't swallow his own spit 'Amy Hugon wrote: What is behind the problems for kidlet #3? Does she have a neuro-biological disorder of some sort? ****No biological or neurological issues. She

would just plain forget. Even now, if we get sidetracked and don't make her a calendar for the bathroom, she'll forget - but now we recognize the *my tummy hurts* and diarrhea and go print another calendar. As long as she can do her happy face when she poops, she remembers.*** . You also said your oldest has medical problems. What? ***Annika has eosinophilic esophagitis - essentially the mother of all food allergies, a disorder where the body sees triggers (different for each kid - in her case, wheat, egg, dairy, all non-poultry meats) as poison and attack with white blood cells, resulting in too many white blood cells in the wrong place. She was in severe pain her entire life til we got this dx'd and properly treated at age 9. She is also *regularly* food allergic to all top 8 (so, wheat, egg, dairy, soy, peanut, treenut, shellfish, fish) So we have epi-pens for emergency reactions to any peanut exposure. She

also has very severe asthma - it's been a long road getting her healthy. She's doing well now, although we're looking at potentially needing surgery for reflux if we can't get it resolved otherwise. Kidlet #3 had that reflux surgery several years back - turns out she had an anatomical screwup, big weak spot in esophagus. No wonder the meds weren't working - and we're wondering if oldest needs this now too. Will do more testing this spring to get more information.***>Amy

[Guest guest]

Then you should go ahead and apply for for SSDI now. Remember lynn has the tape to borrow when you fill out your forms. I HIGHLY recommend that tape!Sharon Re: An opportunity & huge decisionMe, I'd go with a known med. I got a grant through NORD.... 8:00? 8:25? 8:40? Find a flick in no timewith theYahoo! Search movie showtime shortcut.

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