New to Post. Hello everyone!!!

These are some random thoughts, not necessarily in any order of importance:

Why don't you want to try the Copaxone?  Unlike Avonex, Betaseron and Rebif, Copaxone is NOT an interferon, and many people use it without any side effects.  Yes, it is a daily injection, but once you learn how to do that, it doesn't seem to be much of an issue.  The main side effect -- a shortness of breath about 15 minutes after the injection -- doesn't seem to happen to every one, and certainly not every time.

If I were in your situation -- scared of the interferons (Avonex) and faced with Tysabri  -- I'd certainly try Copaxone, first.  The Tysabri does show promise in some folks, but after the brain disease episodes, I'd be putting that as a "last resort".

I can't speak about the IV therapy. That is a "new treatment" to me. I've had MS for a very long time, have been on Betaseron for the last 13 years or so, and am doing OK with it, so haven't explored the IV. But I don't think it's as simple as: "Do the treatment once a month (or whatever the cycle is), and you're fine."  My experience with MS is what you describe: have an exacerbation; recover from some of them, but have residual symptoms that remain between them -- the most common being fatigue, weakness in limbs (for me it was the legs, primarily), numbness, tingling.

As for your doctor: I'd hate to be a doctor these days.  Seems like patients come with two schools of thought: 1) Tell me, doctor, what you want me to do, and I'll do it.  or 2) DON'T tell me what to do! I've done research on the internet and here's what I want to do. Support me!

It sounds like your doctor is trying for a middle ground: "Here's what I recommend, but you should do some reading and research and if you're comfortable with that, let's do it."  You've had a bad experience with Avonex, and apparently told her you don't want to do Copaxone, so she's giving you the alternatives, and saying, "OK, then, which of these would you want to try?"

Some symptoms are treatable, some aren't. Not all patients respond well to the same treatment used on other patients. Often it is a trial-and-error -- if one med doesn't work, you'd be telling your doctor, and ask if there are alternatives.  I don't use Provigil, so can't speak specifically about that, but know that not all the meds used to treat fatigue work well for everyone. Same for bladder control meds (Ditropan, Detrol), and some of the others.

You say "some things she will treat while others she will not, even though they are so similar". Can you be more specific about that?  What YOU might think are "similar symptoms" may in fact NOT be similar, and might not respond in the same way.

Finally, not all symptoms are treatable all the time. Sometimes a med will work one time, and not work again, even though the symptom seems the same.  MS is a very unpredictable disease, and responds inconsistently to treatment.  A hard reality, but there it is.

Congratulations on your baby.  8 months old, huh?  He'll be a reall challenge soon, when he starts walking around and tearin' up the joint! :)

Buckeye said...
Thanks Rhonda and Cats, Your honesty is refreshing. Ok here is the bottom line. This sucks, I just want it to go away. I don't want a daily reminder that I have a disease. I don't want to inject myself. I want a simple solution without the injections.
I want the impossible. I want to know what is going to happen to me.

Well of course it sucks. None of us want it. None of us want ANY sort of reminder that we have a disease.  But we do.  And so long as you have MS, you're NOT going to know what will happen to you.  A harsh reality, but there it is.  MS is unpredictable.  What happens to me may not necessarily happen to you (and frankly, I surely HOPE it doesn't happen to you like it hit me!) Every patient is different and every person's experience with MS is different.

I know the interferon was not right for me. The side effects were more than I could bear. The actual IM injection has now made me phobic of doing injections all together. The smell of the acholol prep makes my stomach turn.

Of course injecting ourselves, or having to submit to an IV is never pleasant.  But it's a reality of having a chronic illness.  I think about my friend with diabetes, who injects herself *several times a day*, has to monitor her blood sugars, pay attention to a LOT more than I have to, with a once-every-other-day stick in my stomach (where I inject the Betaseron). By the way, I found the alcohol wipe was very irritating to my skin, and after consulting several times with different nurses (to get different opinions), I now just make sure my hands are washed, the area where I'm going to inject is washed, my cats are out of the way (there's still fur everywhere; a problem with 4 of them!) and do it.  And give the alcohol swaps to my diabetic friend.

Out of my doctor, and your right I didn't go into it all, but I would at least like to look over the MRI's with me so that I better understand my condition and where I am at. Not to sound snotty but its what we pay her to do. I don't want a call just say that I've relapsed. It’s not fair. I want to know more. I do a lot of research on line and that is where I need clarification and help separating the BS from the facts. I am scared and I cannot do this on my own.

You're right, having a chronic illness is NOT fair.  As for "looking over the MRI's" with you: they are extremely difficult to "read".  Very often two trained doctors, looking at the SAME MRI, will come up with two different conclusions as to what might be going on.  I've seen my MRI. Unless the doctor is sitting there over my shoulder and pointing to a specific spot, I have no clue about what I'm seeing....and even after it's pointed out, it doesn't look all THAT different from any other area.  And whether you have just a few lesions or a lot doesn't matter anyway -- it's the location of lesions (or plaques), not the quantity, that can indicate whether you're likely to suffer disability or not.  So there's not really much to gain by learning how to read an MRI, from the patients perspective, anyway.

about all the doctor CAN tell you is that indeed you're having another relapse. SHE doesn't know what the course of your disease is, either.  It's not like she's trying to hide anything from you. Again, it's the nature of the beast -- unpredictable, different from patient to patient, doing the same treatment with patient A and patient B will come up with different results, etc.

However you are both right, I need to look into more and at least try the Copaxone. The Tysabri just sounds so easy, but as I’ve said…once a month, how tempting is that!!!!

Did either of you start Avonex then switch to Copaxone? Is there a big difference on the pain scale for the injections? I know that one is an IM and the other is not but I am just curious if there is an actual difference.

I think there is a BIG difference between the intra-muscular injection (Avonex) and the just-under-the-skin injection (Copaxone, Betaseron, Rebif).  I use the same sized needles that my friend-with-diabetes uses for my Betaseron (we'll often give each other needles if one or the other has forgotten them when we're visiting).  A sting, and that's that. 

Thanks again for your responses. This is a great site I plan to look for support and reference.
Thanks

Dana

   I see you've been very well welcomed by our little family!  I understand where you're coming from, but I hope you will at least look into Copaxone further.  My husband has been on it for years and no he never tried the interferons, mainly because he didnt want to deal with all the symptoms of MS and side effects too.  Everyone is different though, that was just his choice at the time

   No one wants to do daily injections, but after a while it really just becomes part of your daily routine and there is even a nice autoinjector that you can get where all you do is push a button!  Good luck with your decision, and please feel free to post anytime.

Kimber

Buckeye said...
Thanks everyone. I am starting to come around to the possiblility of trying the Copaxone. My husband and I watched the DVD last night. Yes I cried. Its really the first time that I actually had to face up to what is happening. Right after I was dx I got pregnant as planned and therefore didn't really even have to think about MS. I was so focused for 9 months on my baby.
The thing about Avonex is that the injections seemed to get worse for me. I'm thin and lean/muscular so there were times that the needle hit close to bone. You really had to place it right otherwise it was very painful. Anyway week by week the injection its self got worse and the side effects did not go away or lessen at all and would last for days.
So here I am. 1.5 years dx and 4 relapses.

I don't know how to get over this shock of "I have MS, I now hate needles, I just want to be normal" thing I have going on. It just seems like the other day I was climbing around in the Grand Canyon. I feel like I'm at a stand still and broken. Probably why I don't want the daily reminder. I just don't want it in my face everyday. But most of all I feel broken.
Just reading through the Copaxone info I start crying. When does this stop?

My husband is scared for me to try Tysabri so I am leaning toward Copaxone. As far as the auto inject. I am going to jump out of the chair when it happens? Do you do your injections yourself? Which area is the most tollerant and what is your least so I know where to start.

Thank you again for your support. It really means a lot to me right now.

Dana

One and a half years diagnosed and 4 relapses? You really do need to at least try one of the disease-modifying drugs.  I can appreciate your concern about the Avonex -- that is a very large needle. The others aren't so long and scary, I don't think, and indeed the Copaxone seems to have the fewest side effects.

If indeed you are crying at small provocations (like reading the Copaxone literature), you might want to talk with your doctor about some antidepressants for awhile. You had a baby (which messed up your hormones), you were one one of the interferons (which have "depression" as a side effect); you're hit with this diagnosis of a chronic health situation...no wonder you are upset and anxious!  They might settle you enough that you'll be able to look ahead long term and realize that you're not doing yourself or your husband or baby much good by not doing what you can to slow the progression of the disease...which is to inject one of the medicines available.

Just because you have MS, you know, doesn't mean you have to stop all the things you love! You might just have to think about doing them differently, or pacing yourself more.  Like climbing around in the Grand Canyon.  Unless you start to have serious balance issues, there's no reason why you can't travel and do at least some of that stuff again.  Even in a wheelchair, I've been to the Philippines, throughought Canada, to Alaska twice (and planning a third trip next year!), California...lots of places.  And sometimes by myself, in my own car, driving myself. And it doesn't sound like you're all that impaired that you can't do at least some of those things that you love, with some care.

The MS fatigue is a challenge.  Some of the drugs work well for some people, but not always. You might have to switch around and find another that is better for you.  You have to realize that you're taking care of a pretty active little guy, too -- tiring for any woman, and compounding that with your health situation, it might be that you and the baby need a nap every day!

As I said...none of us like to stick ourselves daily...or even monthly. But I know all-too-well how devastating this disease can be.  When I was diagnosed there were NO meds available...and I suffered for it, with lasting and permanent disability.  I don't wish that on anyone!  If any of these drugs were available when I was first diagnosed, I would have jumped at the chance to get on one of them, and do what I could to keep healthy.  I hope you will do the same.

Neurogurl said...
Hello Buckeye..a little off the topic but could you tell me your experience with Optic Neuritis..your symptoms? Im afraid I might eventually get it and I was just wondering if there were beginning signs/symptoms that lasts a long time before it finally manifesting. Thanks

http://www.nationalmssociety.org/Sourcebook-Optic%20Neuritis.asp

It usually comes on suddenly, then resolves over time.  While often painful, it isn't always so. And an opthamologist can see the inflammed optic nerve, and after it is resolved (gone), the optic nerve remains pale, especially when seen in contrast with the nerve in the other eye.  It's rare that both eyes have optic neuritis at the same time.

    I wanted to wish you the best of luck, and please let us know when you begin treatment.  I know you had a bad experience with Avonex and the idea of a daily shot isn't too appealing to you.  It doesn't necessarily have to be a daily reminder that you have MS though.  If you try to look at it from a positive perspective, no matter what therapy you are doing, you are doing the best possible thing to help yourself that's available today.  I have faith that you have the strength and courage to do this, and I hope in time it just becomes part of your daily routine as it is with us.  Best wishes!  We'll be here to support you.

Kimber