MS - Its evolution

The evolution of what I've been experiencing worries me because of the mystery.

I have decided to not use any of the interferons. the risk was too great for what could happen to me if I attenuated my immune system.
Being a part of studies was a risk I rejected when I learned that 2 people had died when when they were part of a study involving a 'cocktail' mixture of interferons. The progression of my MS has me on occasion excreting in my pants. I've learned to manage by being in-touch with what my body signals to me.
I have to admit that Lyrica is working to alleviate my pain and I don't need to take oxycodeine because of it, but its effect on my thinking (i.e., concentration) is the downside. I play online texas holdem poker and play chess online to monitor how my concentration is fairing. It's clearly been adversely effected. I asked my doctor what the end game is for people with MS and I get the story that we're all different and that MS will not kill me. So I did a websearch and have found that MS was listed as the cause of death in some peoples obituaries. It's not that I am a person with a negative disposition but I really want to know what I can expect in the future. MS has been like on-the-job training where I have to wait and see what happens. I really haven't found anything available that presents something in the form of the unvarnished truth. I can deal with the truth and hate the wait-and-see mode I find myself in. Constipation I now have means I have to take MiroLAX with a suppository. By not really having an encapsulating view of what the future may hold, there is something dishonest about the disease and that bugs me to no end. I've even been told that suicide is not uncommon for people with MS. Something I personally would never do if only for spite. I can understand how some people might get second order sick and tired of having MS with the problems it causes. You know... sick and tired of being sick and tired.

Is there anything at all that 'lays it ALL out'? I realize some of the possible things that could happen may not but so what?

I can see your reasons for frustration. Ms is a frustrating disease. I have found in my own life though, that it has made me do what I was supposed to be doing anyway. Living each day, one day at a time. Noone knows how long they have. So the wisdom of not letting the sun go down on your wrath has only became more real to me. It has made my own perspective of life clearer.

I do not profess to enjoy the symptoms nor the fact that I may have to suffer convulsions, speechless times, or inability to walk. This only makes me enjoy being able to do it today more though.

I guess Ive felt all that your feeling at one time or another.

I agree with Gretchen about the interfuons and I'm also on copaxone without feeling as if my immune system has weakened at all.

thanks
Kiera

For a person who likes to play poker, I think you're gambling with your future by refusing to take one of the drugs.  Avonex, Betaseron, and Rebif are indeed interferons, but Copaxone isn't, so that might be a choice. It appears that you're talking about Tysabri when you talk about the "cocktail..that killed some people...". Further investigation into what went wrong there suggests that at least one of the persons killed didn't have MS to begin with.

Nevertheless, the drugs DO what they're intended to do -- slow the progression of the disease, and reduce the severity or intensity of exacerbations. Since each exacerbation leads to greater disability, I believe I need to do whatever it takes to do just that..so I've been on Betaseron for nearly 15 years now, without any particular long-term negative side effects.

MS in itself will NOT kill you, unless you happen to have a very serious, very rare, virulent form of progressive MS. It doesn't sound like that's what you have, as that form doesn't take long to render a person unable to communicate.  When you see MS as a "cause of death" in an obituary, it's usually there out of laziness - -the person did have MS...but the cause of death is more likely something like pneumonia, or a kidney disorder, or some other problem -- these are all related to the person having had MS, but not specifically the cause of death.  These days, assuming a person is taking care of himself and monitoring his health situation carefully, and has a doctor willing to work with him, people live a LONG time with MS (mine was diagnosed 25 years ago, but probably really was lurking as much as 40 years ago), and do well.

MS can play with your emotions.  People commit suicide for all sorts of reasons, one of which is not understanding what their life situation is -- like, not fully understanding the ramifications of their chronic illness -- and so take their own life.  I'd hardly blame MS for that, as it happens with every chronic illness "out there", that people are diagnosed with.  MS can also cause depression, and a fatalist attitude: "since I have this chronic illness I may as well not do anything to alleviate it, and spend time looking for worse-case scenarios rather than what I can do to make my life better."  There are meds and sometimes simple counseling that can help with this, as well as doing internet searches to legitimate sites, like the National MS Society web pages, where information is presented in clear, logical, easy to understand ways, that might alleviate some of your fears.

Can MS lead to severe disability? Yes.  But the reason for the drugs is to try to postpone, or prolong that possibility, or if indeed it happens, to manage it better.  And severe disability is still LIFE. I have bladder and bowel problems, use a wheelchair for mobility -- yet live in my own home, manage my own affairs, travel, do some consulting work, cook, clean, tend my cats, work on my hobbies, keep my husband happy, do all those common things, just not in common ways. 

 

I am under the care of the University of Colorado Medical Center's neurology department. The central issue was to take interferons or copaxone. Several with MS have decided to take nothing (Avonex, Betaseron, Rebif or copaxone). Long term use of these, what I refer to as poisons (and my neurologist doesn't disagree), will cause problems after long term usage. So the central question is, do I just deal with symptoms as they crop up? For or me, was do I want to temporarily delay MS at the price of their use causing my death in time? The use of the interferons and copaxone are not without risk. There isn't even an assurance they'll actually work. But work how?

I'm not alone with my choice.

I haven't seen anything either about long term usage and problems with the meds available.  It is however a personal choice whether to take the meds or not, and some people do chose not to take them for various reasons.  I have a good friend who was dx is 1984 and chose not to and does well without them but her MS doesn't seem to be progressing quickly.  She has been the same for years and I am happy that she is doing as well as she is. 

 

My DH is another story, undiagnosed for 14 years and by the time of his dx he was severely disabled.  Had he been diagnosed earlier and been put on meds would he be as disabled as he is now?  I really think it would have taken a lot longer because when he started  the meds he hasn't had any noticable progression.  It is a personal choice though, no meds are without risk, but for us it was a decision based on quality of life and trying something.  I can't imagine how he might be now if he was still on nothing.  With MS you just don't know what it's going to do.

WELCOME TO THE BOARD! I'M GLAD YOU'RE IN REMISSION RIGHT NOW (WELL, EXCEPT FOR THE OPTIC NEURITIS!) I HOPE THE REMISSION LASTS A LONG TIME. TAKE CARE!