Definate MS...

[sallyb]

Went to the neuro this morning. I definately have MS. He is sending somebody to my house within a week to teach me how to give myself the Copaxone injections. He told me that I will probably need somebody to help me because they will make me real sick. My mom will be in Texas, and there isn't anybody else. Could somebody tell me what I can expect? I am very, very sick now WITHOUT the injections...but, I am pretty good at handling it. How bad could the injections make me?

Sally

[stillstANNding]

Sally, until someone else gets here, let me just offer that I don't believe C makes you sick at all. I haven't been on C but it is one of the reasons that people pick it - no interferon flu.

Glad you have some clarity and sorry you have MS.
ANN

[jena1225]

to Still Standing (from what I have heard). It is supposed to have less side effects than B, and I am on B with very subtle, and not very often, side effects.

[lady_express_44]

There are some rare adverse reactions that they will want to tell you about, and they will also tell you how to use the injector, rotate, and store the drug, etc.

However, I agree with Ann, Sally. It is my understanding that Copaxone will not make you sick (unlike the interferons MAY initially do for SOME people).

Cherie

[bnz]

Sally, I'm sorry to hear you have MS as well. I do use Copaxone and it does not make you sick. No flu-like side effects that I experienced with Betaseron. Not only did I have the side effects with the Beta, but it did make me extremely sick so switched to C.

bnz

[McCarthy]

Hi, welcome to the Dx club. So sad to have you here :(

Good luck with the Copaxone, you shouldn't have too much trouble with it once the training bit is done with.

[Cat Dancer]

I've not ever heard that Copaxone will make you real sick! There are side effects to it..as there are to all medicines...but the side effects of Copaxone are significantly less than the interferons (Avonex, Betaseron, Rebif..) YOu might ask your doctor to clarify that statement.

[sallyb]

Hmmmmmm....I am sure you are all correct...at least, I hope you are. I wonder why my doc said that????? Maybe because I am very, very sick right now? Anyway, It won't be but a few days before the trainer gets here, and I find out. Sounds SO stupid, but I am glad to be out of limbo. I know how awful MS can be, but it was soooooo scary watching myself go downhill so fast (wondering if I was dying), and watching the docs shrug their shoulders, not knowing what was wrong. Thanks for your responses and the pats on the back...............sally

[jendie]

I can remember feeling relief after getting the dx. Not that pinning a name to what was causing my sx, but just finally knowing that I was not CRAZY.

Take care...

[*Joy*]

Sally,

I take Copaxone and it doesn't make me sick at all. The nurse will explain how to give the shots. They have an Autoject available, have you ordered it yet?

http://http://www.copaxone.com/

It's been a while since I've done this but I believe you can call Shared Solutions for supplies such as an autoject and a travel case.

Shared Solutions® at 1-800-887-8100

Let us know how it goes for you.
Best wishes,
Joy

[mark53]

sallyb, i'm 3 yrs. Copaxone and i've never got sick, i'm 25 plus yrs MS and now SPMS so some days i just don't feel good but thats the MS not the Copaxone.you should be OK. good luck. i do use the autoject most of the time.

[paj]

Sally,

I'm glad you have a place to start to try and fight your illness.

I have taken C daily since 9/02 and it does NOT make me sick. I have had some injection site reactions, but again, it does NOT make me sick.

We are all different and have different reactions, but I am not sure why your neuro would suggest it would.

Good Luck to you. It gets easier to inject (for most of us) as we go along.
For me, its almost like brushing my teeth every night-I'd say flossing but I don't do that nightly. ;)

Good Luck to you.

paj

[Lyn]

So sorry to hear about your Dx - the only plus side to it is that now you know what you are facing, and you can take steps to minimise it.

Lyn

[K969]

The DX isn't the best news that one would want BUT I have always felt really sorry for the Limbolanders. I think NOT having a name would be the pits.
I was one of the "lucky" ones that got dx straight away. BIG shock though.

As for the Copaxone. I have not been on it so cant tell you my experiences. I have however been on Betaferon (6 Years) and 1 year Avonex and have heard many times that Copaxone is the better one in regards to side effects.

I am not on any anymore due to being Secondary Progressive now.

All the best to you
Love Tracey

[sallyb]

My doc put me on the Shared Solutions Auto Inject. He seems to be on top of things.

Right now, I am so sick that I am getting panicky. I have been this way since before August, and progressively getting worse...where I feel as my life is draining out of me. I so hope that the injections help me to feel better quickly. I am living somewhere between blacking out, and wishing I would die. How quickly would Copaxone work? I need help.

[Cat Dancer]

My doc put me on the Shared Solutions Auto Inject. He seems to be on top of things.

Right now, I am so sick that I am getting panicky. I have been this way since before August, and progressively getting worse...where I feel as my life is draining out of me. I so hope that the injections help me to feel better quickly. I am living somewhere between blacking out, and wishing I would die. How quickly would Copaxone work? I need help.


Maybe you could explain a little more thoroughly what you mean by "sick"? None of the drugs will "help you to feel better". They're designed to slow or stop progression of the disease, but your symptoms may well remain. But I don't know exactly what you mean by "sick". Maybe there is something else going on with you, besides MS?

[msmaggie]

I've been on Copaxone since June 2002. Have had no problem whatsoever. Injection site might have gotten red at the beginning, but now it doesn't.

I am curious, too, just how 'bad' you are feeling. Is it anxiety, pain, just feeling yucky or something else? The C will not make things feel better, except people report feeling 'better' as they feel that they are taking control of this disease as best they can to prevent it from getting worse.

Tell your doctor if starting C doesn't make you feel better. He may be able to figure what else might be going on.

Good luck.
msmaggie

[jena1225]

[QUOTE=msmaggie;48925]

Tell your doctor if starting C doesn't make you feel better. He may be able to figure what else might be going on.

Good luck.
Remember, like CAT said, the CRABS will not make you feel better, or take or sx away, so keep that in mind.

For whatever is ailing you, if related to MS or not, there are meds for just about everything.

Drugs for:

Depression
Fatigue
Spasticity
Tremors
Pain.. and more I would let him know exactly what you mean by "sick" and he should be able to help you. Hope you feel better!

[In Denial]

When I took Copaxone for a few months, it usually didn't make me feel sick. Once I wondered if I was having an allergy reaction that is discussed in the literature, but it went away quickly. My problem was with the site reactions.

Good Luck.

[Virginia]

I am not on Copaxone now, but was for six months at one period. It did not make me sick. I did get site reactions, and there is one rare reaction that I am sure will be discussed with you. That happened to me once.

Like the others I am wondering exactly what kind of sickness you are referring to. Do you mean you just feel real bad, or are you flu like sick? I am sorry you got this diagnosis, but it does seem you were ready to get an answer to the problems you are having.

Good Luck,
Virginia

[sallyb]

Just to clear things up because it sounds as if a few of you got confused...I have not started the copaxone yet...next week. When I say sick, I am so very weak that I feel like my life is seeping out of me. The Fentanyl has helped to get the pain under control, but the fatigue is sooooooo bad that I just can't stand it. I know I am going through some sort of a flare-up type of thing, but it has been increasing since August, and I just can't stand it anymore. My sink has filled with dishes, and I wash one as I need it, and the filth in my appartment is really bad. I feel as if I will pass out if I even try to do anything about it. No money to hire anybody. I live on disability. Is there any type of med to help with fatigue?

[K969]

Hi,
If you are so "sick" as you put it then you should tell your doctor and he/she can help.

Please dont take this the wrong way Sally BUT if you feel so weak and fatigued than maybe you should go with that. ie: REST instead of being on here all the time. I know when i am really fatigued out I battle to sit at the computer and see the screen let alone actually write anything. Like I said, please dont take offence at that, it is merely an observation. You seem to be here all the time.

As for drug for Fatigue. I believe Provigil is good for that but there are being equipped people here to answer that for you.

All the best
Tracey

[sallyb]

I come here once a day...just to know that I am still alive.

[Cat Dancer]

Just to clear things up because it sounds as if a few of you got confused...I have not started the copaxone yet...next week. When I say sick, I am so very weak that I feel like my life is seeping out of me. The Fentanyl has helped to get the pain under control, but the fatigue is sooooooo bad that I just can't stand it. I know I am going through some sort of a flare-up type of thing, but it has been increasing since August, and I just can't stand it anymore. My sink has filled with dishes, and I wash one as I need it, and the filth in my appartment is really bad. I feel as if I will pass out if I even try to do anything about it. No money to hire anybody. I live on disability. Is there any type of med to help with fatigue?

I don't think we're confused -- I think you're suffering from depression, compounded by fatigue. We all deal with weakness and fatigue, and certainly don't hire anybody to do stuff! We just learn to deal with it, and get on with our lives.

You need to talk with your doctor: there are meds for fatigue, for sure. Not all of them work for everyone, so there might be a bit of time when you have to try one, and then another, to find one that works for you. And be sure to ask about depression, which can be common with MS. Many folks here are on an antidepressant, and that might help you not only with the depression, but also with pain and fatigue.

I use a wheelchair full time and still manage to keep up with basic household chores. Maybe not as efficiently as before, and on my own schedule, but I do them. You can, too. But you need to address those issues of fatigue, pain, and depression, and soon!

[bluesky63]

We all deal with weakness and fatigue, and certainly don't hire anybody to do stuff! We just learn to deal with it, and get on with our lives.


I use a wheelchair full time and still manage to keep up with basic household chores. Maybe not as efficiently as before, and on my own schedule, but I do them. You can, too.

Cat Dancer, I'm glad that you've been able to deal with your disability this way. But your experience is yours alone, and each of us has very different experiences.

For instance, I am having an extremely different experience. I have been physically unable to do my dishes and housework, to go shopping by myself, etc., and I can't just "learn to deal with it." It is a physical, medical fact, just the same way that being unable to stand up and walk the length of a football field is a physical, medical fact.

I suppose you're trying to encourage sallyb, but you certainly do *not* speak for the board on this issue.

[Cat Dancer]

WHAT is a "physical medical fact" -- depression? I acknowledged that. WHY are you "physically unable to do your dishes"? Can't move your arms? Can't sit on a stool to reach into the sink? Doing some housework is a challenge -- I struggle with operating a vacuum cleaner from my wheelchair, for example -- the cord gets tangled, it's hard to maneuver the chair and the vacuum at the same time...but I do it. And yes, going shopping by myself is also something I can't do anymore, as I can't walk even to the back of my car.

But I don't claim to be "sick", or "..so very weak my life is seeping out of me", nor do I throw up my hands in despair.

No, I don't speak for the board, and obviously not for you, either. But my advice stands: she -- and perhaps you -- should talk with your doctor about depression, and see if you can't get some MEDICAL, PHYSICAL intervention for that.

[Virginia]

I think another thing to keep in mind here is that all our circumstances are different. Some live in places that are a little more adaptable to our health issues as they progress. Others do not. Some have help that is not hired help, but a husband or wife that they can just turn to, at least part of the time and say would you please do this - others do not.

Sallyb there are times when my fatigue is much worse than at others, and hopefully you are going through one of those times when it is at it's worse. I have had friends who have been given meds for fatigue, and gotten some relief. Even if the relief is small it might just be enough to help you get through it. And yes, there have also been times when I felt that my core body strength was just slipping away. It is a bad feeling and I hope that you are able to get some help.

When you are feeling just a little better, and assuming you are physically able, you might want to consider trying something like Yoga. The gentle kind that is strengthing, but not tiring. Some people on this board have also mentioned Pilates. Two months after I was diagnosed I took some Yoga classes, then I got a tape recommended by my instructor. Six years later I am still using it and consider this to be one of the better things that I have done for myself. The Yoga classes were not expensive. They were offered through the MS Society. However, I also know of young people who have gone to Yoga classes that cost very little through wellness centers and senior centers. Some of the people were young, but were able to go to the senior center because of the MS. They felt more comfortable doing this than trying to keep up with their own age group. Also, the cost was so much less.

You will hopefully find your niche as things settle down for you.

Best of Luck,
Virginia

[Matthew's Mom]

Sally,
Sorry about your dx:( I can't comment on copaxone as I've never been on it.

But I know EXACTLY what you are talking about in regards to doing dishes etc.

I think a couple people here have been harsh with you.

I have tried sitting at the sink and get the feeling like I'm falling over, extreme weakness etc and have let my dishes go. Same goes with vacuming etc.

With you just getting dxed I'm sure you are depressed which is common.

Do talk to your doctor about this, but also maybe you can get some help in regards to someone coming to your home to help out with housework. Your doctor might write a script for a home care aide to come in and help with not only cleaning but shopping etc.

Also was wondering if in addition to your MS symptoms you could have something else going on. Have you had any bloodwork recently? Fatigue can be caused by anemia, maybe supplements would help? Just a thought.

Even on days when I am very tired, weak, whatever I visit the board just because I need the "interaction" of others.

I hope you begin to feel better soon.

God Bless,
Pam

[jena1225]

Nice post Pam :)

Sally - When I read your post as to how exhausted and fatigued you are, barely able to do anything, the first thing I thought was how severe your depression and fatigue may actually be. I am sorry :(.

But, unless you see your DR, you will not be able to get treated with the right meds. \

Please do not waste any more precious time and call them on Tuesday and tell them it is urgent!

Jen

[xo++]

Hi Cat Dancer,

I often do bluesky's dishes and odd jobs around her house. She is not depressed. The physical, medical fact to which she refers is disability related to multiple sclerosis. As a result, she suffers from arm pain and weakness which makes certain tasks quite difficult.

You sometimes seem to consider your version of MS and your particular set of issues valid for everyone with MS. Would you suggest that someone who is bedridden as a result of MS seek treatment for depression if they have trouble doing housework?

MS affects people very differently, and where some people are able, others are disabled. Where you are able, others may be disabled.

Mark

[Cat Dancer]

Hey, why don't you all start a NEW thread to dump on me, and instead encourage the original poster to see the mental health care she so obviously needs? Don't highjack a serious cry for help with your dislike of me, please!

[jena1225]

[QUOTE=Cat Dancer;49205] We all deal with weakness and fatigue, and certainly don't hire anybody to do stuff!


I am sorry CAT, but I have to disagree with you on this one.

I just started having my step daughter clean my house every Friday, and what a blessing it has been!

I have 2 small children, a business, and of course MS, so yes, some of us find it neccessary to hire help so our children do not suffer as much. We have that little extra time to spend with them on homework, reading to them.. I could go on and on...

I do agree, however, that she sounds depressed and sometimes the hardest part about fixing it, is actually making that first step - so I hope she will :)

[xo++]

Hi Cat Dancer,

I certainly don't dislike you.:) On occasion I disagree with comments you make. I assume you sometimes disagree with comments I make, if you think about them at all. If we strongly disagree with comments made in a thread, I think it is proper to register our disagreement in that thread, rather than "calling someone out" in a new thread which overdramatizes any disagreement.

Hi Sally,

As you probably know you need to address these issues with your physician, who I hope will order appropriate therapy. Copaxone will not provide you with any sort of immediate symptomatic relief, but the drug has a benign side effects profile. For fatigue you might discuss with your physician amantadine, provigil, ritalin or acetyl l-carnitine. Good luck.

Mark

[jena1225]

Sally - I take Prozac and it actually helps with depression AND fatigue.

Might not hurt to ask about it. I took the others and they nade me so hyper, and then I still needed something for the depression. FOR ME, this is like killing 2 birds with 1 stone...

[jena1225]

I come here once a day...just to know that I am still alive.

Oh, and meant to tell you... nothing wrong with coming here whenever you like :) and I completely understand why. I know a lot of people who come here ONLY when they are sick.

It helps to vent, talk to others, etc...

I have a great hospital tray, so whenever I am on "bed rest", or feel sick, whatever, I have it in front of me with my computer, etc...

Being sick does not mean we cannot communicate...

[sallyb]

Please dont take this the wrong way Sally BUT if you feel so weak and fatigued than maybe you should go with that. ie: REST instead of being on here all the time. I know when i am really fatigued out I battle to sit at the computer and see the screen let alone actually write anything. Like I said, please dont take offence at that, it is merely an observation. You seem to be here all the time.******by Tracey



Tracey...you reminded me why it was that I quit the board a long time ago. Your response is as if I am lying about my condition. Evidentally you are offended by people who cry on the board. Yes...I am in a flare-up...exacerbation...or whatever the heck you want to call it. I am also on disability because of chronic pain due to herniated discs and one that compresses on my spinal cord...so, there are also other physical problems that make me unable to do certain chores. I also do not have any family...and have been away from friendships for a long time since I have had to stay at home without working, or anything else. Depression??? oh, yes.

I do not tell you all of this for your sympathy...because I do not care to have that, nor anything else from you. Goodbye Braintalk....thanks to the sweet ones who tried to help me...but I cannot take harshness. sally

[Matthew's Mom]

This sucks.:mad:

Someone comes here who is in obvious need of some much needed support and there is always one or two people who have to make comments that make that person feel worse than when they posted, AND make them feel that that no longer want to post for fear of the same happining again.

Most of us here have been or are going through right now what Sally is, not being able to do what we used to, and thank God for the 99% of the caring people here who understand and want to help.

I've had this happen to me in the past, a few replies to my posts which were downright mean, and it made me MORE depressed where I just sat and cried.

But then remembering that there are many more people who understand and really do want to support each other through our rough times, I wiped my tears and said to heck with that 1%.

Sally I hope you stay for we are here for you.

Pam

PS-ditto to what Jena said. Once in a while one of my kids will unexpectedly clean the living room or my daughter comes over and will clean for hours, I mean really clean, and it is such a Big help. If someone asks if I need something I usually reply "no nothing" but then when they do it anyway inside I'm thinking "oh thank you , thank you" :)

[lady_express_44]

"You can't judge a person till you walk a mile in their moccasins" . . .

I think it things can be much different for those who have a partner, then for those of us who don't. Same with if we have kids, or not.

Sometimes there is just TOO much that needs doing, and it all just becomes to overwhelming to do anything. If I had a partner to do the driving, the shopping, etc., maybe tackling the dishes or laundry might not seem so ominous. But when it ALL has to be done by me, it is either too overwhelming to do anything, or only the shopping might get done that week.

I am not always feeling that way, but there are certainly times where I have/do.

Sally, most people do understand.

Cherie

[bluesky63]

Cherie, exactly. I am a single, disabled parent with three children and very few resources. Personally, I have done almost no housework for years -- I've had various combinations of hired help, family, insurance, friends, landlord, neighbors (hi, neighbor :-) ) -- whatever is available. And it's not depression. Heck, I'm thrilled not to do housework. :-)

I don't want to diagnose sallyb with depression, even though that may be an element of the situation -- who wouldn't be depressed in her situation? But as Pam suggested, she could have anemia. She could have autonomic problems. Etc. I don't know her history and situation, so I don't want to make assumptions. As people have suggested, it's a topic for her and her doctor.

And Cat Dancer . . . I don't dislike you either! You have given great advice to people here, including me -- for instance, when I was new to the whole wheelchair experience, your advice made a major difference to me. In this thread, I thought your statement about not hiring people was too sweeping, so I posted my own experience to offer sallyb a different perspective -- that's what we do.

[In Denial]

Hope you feel better, SallyB. Don't judge your response to problems based on what other people might be able to do. Do what you can do and get whatever help you can.

[jena1225]

All I can say is "DITTO" to what Blue, Lady and Matt said. Nothing more to say, except I also hope you stay Sally!