This is a great question. I have had only three flares but there was no doubt as to what they were. My doctor defines them as any symptom that is one that is significantly worse for longer than 24 hours or any new symptoms that lasts longer than 24 hours. So for exmple: one of my residual symptoms is chronic vertigo. When that got worse for longer than 24 hours, that was a flare. I flared about a year ago; that resulted in my feet and most of my legs going nearly completely numb. That was also a flare. I tend to flare really big and obvious. I know that that is not the case for everyone. It is something you will figure out as you go. If you have any questions or concerns, you should always just call your doctor. My flares, so far, have resulted in permanent damage.
Love and prayers,
Gretchen gave you a pretty accurate description of a flare. I think of a flare as a new symptom, something that hasn't occurred before, lasting for the 24 hours she talks about...
or a significantly dramatic intensity or increase of an old symptom. Like, I went for a long time with weak legs...but when I'd wake up and realize that my leg was so weak that it could not support me any longer -- that was a flare. The "weak leg" was just a continuation of "stuff" that was going on, and would continue to go on, for a long time.
What you describe sounds to me like "residual" stuff -- stuff that is just there, annoyances, reminders that you have a chronic disorder of your central nervous system, permanent damage most likely, but not so severe that you're significantly disabled by it. Think of a scar on your finger -- you've cut yourself enough to maybe need stitches, a scar is left. The finger still functions..but the area where the scar is "feels funny". Maybe feels numb. Or the finger doesn't bend quite like it should -- bends enough to leave the finger functional, but not "normal". That's sort of what is happening with your nervous system. Signals are still getting through, but sometimes "shorting out", or zapping along different paths, or "hitting bumps" in the myelin, so not getting through perfectly, or causing discomfort, or whatever. Bummer.
Ok so this is my understanding of it. The scars (hence the name sclerosis) are places where the electrical impulses are no longer going through. That part of the brain/spinal cord is damaged. Once damaged enough, you will have residuals or symptoms. The meds for progression will not treat that. In fact, if I went on how I felt, I would think that the meds are not working at all. But I don't feel that that is the case at all. The meds are trying to stop new damage to the brain and spinal cord. The meds work in different ways but they are trying to balance the immune system so it does not attack the brain and spinal cord.
Specifically the immune system is attacking the myelin sheathing around neurons in the white matter of your brain. This causes those electrical impulses to go haywire and messages do not get through. When messages do not get through, then you have paralysis, numbness, vision problems and anything else that MS patients suffer from. That is why this disesae is so varied. It really depends upon the location and severity of your lesions. Rhonda just posted information that links lesion sites to symptoms.
There are meds that treat symptoms. There are meds that help with pain, fatigue, bladder and bowel issues, spasticity and others. There are also the steroids that can help shorten the duration of a flare. The damage done by a new flare cannot be lessoned by steroids; it is more for comfort and relief of symptoms. Apparently by the time you are experiencing new symptoms, the damage has been done. Even if your symptoms get worse of a course of days and weeks, steroids will only make you more comfortable. That is why many doctors offer steroids as an option. You don't have to take them.
Unfortunately there are no meds that can re-myelinate your brain for you. That would be treatment and cure righ there. Over a really long time (like several months or years) your brain may re-myelinate a bit on its own. For example, it has been a year since my last flare. I am just now getting a decent amount of sensation back in my feet. Messaages are getting through. I know that will never come back all the way and it is part of my residual package now but it is better than when I was just completely dead numb in both feet. Chronic vertigo is also one of my residuals. I have had vertigo so badly that I could not walk but with the help of a nice sturdy wall. I have dealt with it for over two years now. But I must be re-myelinating because I have less vertigo then ever before. I still get it anytime I am in a crowd or there is lots going on and I am looking at things and moving/walking. I am so grateful for this!!
Well this was really long. I hope it helps explain things for you. Keep doing all you can to learn about MS.
Love and prayer,
I just hit submit and I see that Uppitycats has beaten me to the punch!!! Thanks Cat for your post. Mine is going to sound a bit redundant after yours. I have got to learn to type faster .
Post Edited (Gretchen1) : 4/21/2008 7:34:20 AM (GMT-6)
Well again, I am far from an expert but this is my understanding. You can have a flare when you develop a new lesion. You can also flare on your old lesions. When I flared last year it was on the spinal lesion (an "old" one). I have been told that if you have an "active" lesion that is shows up very white on an MRI with contrast. What I don't know is can you flare and show no activity on a current MRI. One thing seems certain to me, MRIs, as much as they are a wonderful and relatively new diagnostic tool, are imperfect. The brain is extremely complicated and very hard to see.
Hummmmmm. Does this make any sense at all or did I just make you all a bit dummer!? Sometimes I wonder!
Love and prayers,
Good morning all, and I would like to direct my question etc to gretchen. I am a bit confused, after reading a couple of your posts. I am hoping that you can help me, as I am very new to MS, and trying to obtain as much information that I can get so that I can have a full understanding of this disease, and ways to deal with things as they may or may not come up.
On April 10th, you posted on the thread "Switching Meds". In this post you were talking about Copaxone, and stated that you feel the best you have ever felt since your dx. You further indicated that you were convinced that the Copaxone was working.
On this thread, on April 21st, you were commenting on the meds, and you were talking about the meds out there to help stop the progression of the disease. So I have to assume that you were referring to the Copaxone when you stated that if you went on how you felt, you would think that the meds were not working at all. But you did further state that you did not think that this was the case.
So this is where I become confused, and I am wondering if you could clarify for me if you are feeling better, or if you are feeling good, and if you are or not contributing this to the Copaxone. I just need to know so to kind of know what to expect from this drug.
Thank you for your time, and have a nice day.
I feel great but I don't feel drugged great. It is not like you can feel this med working like you would with a decongestant or something. It does not treat symptoms. But, I do feel so much better. I have felt really awful, really awful with this diease. I have struggled with heading spinning vertigo that caused me to vomit in my bed and kept me from walking. I have had terrible spasticity that caused incredible pain. I never thought I would get to where I felt anywhere near normal. I have had days where I thought I was never going to be able to keep working. My job is pretty active (5th grade teacher).
I have been on Copaxone for just a little over a year and a half now. I made a lot of changes along with taking copaxone. I get regular excercise. I lost weight. I have changed my eating habits. I have changed my sleeping habits. It was incredibly hard but now it is just what I do. It is all part of a new but very accepted routine.
I have gone just about a full year without a flare. I had three flares in ten months when this all hit. I have clearly re-myelinated a bit evidenced by the reduction in symptoms I have had over this last year or so. Despite having lots of symptoms, I am feeling good about the copaxone. If I said anywhere that copaxone would stop the progression of this disease, I am sorry. It will not stop it, it will only slow it down. The other thing you have to remember is that this is MY MS. Everyone has a different version of this. If you are looking for some sort of pattern, you might be disappointed. You want to know what to expect - well that is just it. There is no predicting this disease.
I've been on Betaseron for a lot of years now...at least 15, maybe more (I'd have to go digging through my medical records to see for sure when I started.)
I have to say I feel better, since starting it. Am I attributing that "feeling better" directly to the Betaseron? No.
I'm feeling better because -- before I started the B, I was having 2-3 exacerbations a year, each of which caused significant impairment, and it took a long while to recover from each one..only to have another. Now, since starting B, I had just one, about 2 years into starting it, and none since.
Are any signs of MS gone? No. In fact, I've had a slow decline -- I was walking (with forearm crutches) 15 years ago; now I use a wheelchair full time. I have bladder issues that worsen sometimes, seem to recede other times (controlled by medication). I have bowel issues. I have weakness in my limb. My vision goes "wonky" from time to time. And so on.
But I'm not having exacerbations. So I'm not going through those periods of intense flare-ups of symptoms, feeling ill, being hospitalized, having to work my way out of them.
I'm "feeling better" because I can plan a bit better for the future. Not having flares means that maybe I can do something next week..or next month..or next Fall...and not have to worry that I'll be hospitalized with a flare. I'm "feeling better" because, while I still have MS and tons of stuff going on, nothing much new has come along, so I don't have to "learn new tricks" to deal with this disease.
I'm "feeling better" because, while it's only a small bit of control, I've still taken control of this disease as much as I can, doing what I can to slow it down (taking the med), and it seems to "be working".
The drugs may ... or may not...stop progression, or slow progression. As the others have noted, MS is a very peculiar disease/disorder -- we each experience it differently. The drugs (Avonex, Betaseron, Copaxone, etc.) don't treat symptoms; there are other meds you can try for some of those.
One last thing...for me, "feeling better" has come about because I've reached a level of acceptance, of understanding. I know (for the most part) how to balance having MS with other stuff I want to do in my life, so I'm not always fighting the MS so that I can get about my day, but instead have learned to live with it. Which I've done for 25 years, now..and counting...
Good morning all - thanks to each of you for your post. No Gretchen, you did not confuse me more, you actually helped me put some of these things into perspective. Thank you.
It seems D'Awesome that you and I are starting the journey together at about the same time. Its is kinda scary to say the least. It is the unexpected that drives me nuts. We are planning to go to Florida for Xmas next year, and my stomach gets a pit in it thinking about it sometimes, as I think "what if". Now I have been on copaxone for about 6 months, and since then nothing new has sprung up. In fact some things are not as bad as they use to be - for instance, I do not get that electric shock thing going on when I bend my head forward. And my knees do not tingle like they did from time to time when I went for a walk. And that obnoxious terrible head fog/spacey/where I am/who am I feeling as all but passed, unless I get too tired, and don't take control of the situation - even then, it does not compare to what it use to be....
So I guess we can work together on this, seeing that we are about the same as far as time of dx (Dec 11th for me)
Uppitycats, your post left me speechless, and touched my heart. I learned just by reading your post that "feeling better" is a perspective thing - it all depends on the person, as to who they are, where they have been, and where they are now. Your definition of feeling good is going to be completely different that what feeling good means to someone else. Thank you.
I stay very positive, and attempt to do all the things that I use to do....I remember a few years ago that my brother said to me - do you ever stop, and do you ever stop smiling. Well before my dx, and going back three years ago, I started to feel not so good, I gradually stopped doing things, the things that I loved doing, the things that identified me as me. I stopped smiling. I was scared to death, cause I knew something was terribly wrong, and no one in the entire world could seem to narrow it down. I lost interest in life, and I think I was to the point of giving up, and then - bang a dx, and I was actually glad to know. Since then, I have a bit of spring in my step, I dream (with some caution) instead of dreading upcoming events, and I have a smile on my face again. I too changed my sleeping habits, eating habits, exerise habits, etc - and take copaxone. What ever it is that has helped me feel better, then I salute it. And I look forrward (again with caution) that I will continue to venture down this trail.
Thanks to you all, and have a great day and weekend
Good morning - I chose Copaxone as it was the one that seemed to have to least side effects - ie...nausea, etc. The downside is that you have to take a shot a day, but you get use to it......it has now become a daily routine, and I compare it to being a diabetic. I have everything down to about 30 seconds, in - out, done.
You were dx in March, so you should make your decision quickly and decisively, and get started on a treatment program.
Now as far as getting rid of the electic shock feeling, and tingling etc.....do not be terribly surprised if it does not go away comlpletely. And Copaxone does not work immediately - it could take 6 months to a year before the full effect of the medication kicks in.
Now in my case, yes, the electric shock feeling has more or less gone away, but it is still there in the background. Posture seems to play the major role in this. It is there enough for me to notice from time to time if my posture is poor, and this usually happens when I get tired.
Same as with the numbness and tingling in my hands. It has been minimized, but again it is still in the background. Again it surfaces, not to the extent that it use to, but it still surfaces when I get tired. And it really does suddenly appear in my hands if I stick them in warm/hot water (there goes the dishes - ha)
Now I do not know if it is as a result of the Copaxone - but I would like to think so. Possibly the copaxone has kicked in enough now to slow things down, and give the body a chance to re-myelin - but I am only guessing.
To me, and I am only speaking of me, is that fatigue is the major trigger. When my head starts to get foggy, when my hands start to tingle, etc - I know now that this is a indication and sign for me that I need to grab a nap, or take "5" and when I do, things get back reasonably to where they should be.
Note; I have read that there is no, or very little reaction with Copaxone to other drugs, which might behelpful for you in you decision as to which one to take....
Have a nice day
Good morning D'Awesome - are you in Canada bythe way? If you are, I can go over medical coverage for you on copaxone.....