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CLAMS Multiple Sclerosis BB

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CLAMS Multiple Sclerosis BB
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Re: Re: So Confused - newly diagnosed

its hard my mom died Im9 she was in 1999

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Replying to:

Wow Kandace,
Where do I start... I was diagnosed on April 1, 1999. I went on betaseron, and stayed on it for a year and a half. For me, the sickness feeling never left. The nurse informed me that it would after 6 months, but it didn't. I had to "dig deep" and find some more patience, but after a year and a half, I went to the doctor and told him I was tired of being sick. He then put me on avonex. Once a week, but being sick once a week was better than being sick every other day. Eventually, the avonex started to do bad things to my liver, so I had to stop taking that, and I went on copaxone.

I'm off of all medications now. None of the ABC medicines were tolerable for me. It's not the end of the world that I can't take these medicines, but the doctor is sending me to the Mellen Center in Cleveland Ohio (the Mellen Center is a clinic dedicated to people with M.S.) and they are going to see if I'm a candidate to get a steroid infusion once every other month. The steroid infusions do me a lot of good, but they can effect your body later.

If you can tolerate it, stay on one of the medicines for M.S. I know other people with M.S. and they are doing really well on any one of these medications.

Another thing that you will have to learn (and it took me a long time to get this through my thick head) is patience. Make alternate plans just in case you are going somewhere and then it hits you that you are not feeling good. Learn to roll with the punches, and most of all, your attitude is everything. My attitude is "I don't live with M.S. It has to live with me, and I can be really hard headed sometimes (just ask my wife!)

Keep your chin up. And by the way, yes you can still feel better from a cold and still have the M.S. flare up. The M.S. has a mind of it's own, and just because your cold is doing better, doesn't mean that the M.S. has taken a break.

Good Luck,
Marc Coppins

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Replying to:

I was diagnosed with MS in mid October after having to be hospitalized for a week. I was numb from the chest down and in my hands. I could bairely walk, and couldn't use my hands. I am only 23. I have to say I was pretty scared because I didn't know a lot about it. Also the nerologist (sorry I know I spelled that wrong)was not very personable so to speek which has made this jorney even harder. I am in the midst of switching doctors now because having a doctor that acts like he is too good to be treating yet another case of MS is not cutting it for me.

I have started taking Betaseron and well, so far so good I guess. right before I started taking it I would get this weird feeling in my arms and hands in the morning. It's like when your foot or some limb falls asleep on ya. When it starts to wake up you get an intense feeling right before the pins and needles start. THATS what I felt. Along with that my arm(s)would get very heavy and lose my cordination. I still get that feeling everyday almost three weeks after it started and all. It goes away after a few minutes but it still sucks. I am also tingley all over (which comes and goes in intinsity all day) and when it is bad, I can't bend my head forward without getting a "rush of electricity" through my body. Also in the past couple days my hands started to go numb again. it comes and goes as well. That was the only part of my body that had not gone completely back to normal.

In this whole time period I have been battling a cold of some sorts. It comes and goes - some days I feel better and others it just hits me hard. On top of all of that I am suffering from the minimal side effects from the betaseron. I have to say, the time I get them the worst is the first time of upping the dose. Other than that I just deal with mild fevers. Not real bad. Not like I thought. My beta nurse told me that the fevers would make my symptoms worsen but should go away as the side effects go away. And also catching a cold can cause the same thing. But I'm so confused as to what is normal at this stage with the cold and starting the meds that I don't know if my attack is really not over or I'm having another one or what. I know the meds take awhile to kick in and all too.

Can you feel better from having a cold but still have your MS flair? Meaning eventhough I feel better can the bug still be effecting me and the MS? Also can you go through fevers for days on end with this medication?
I AM SO CONFUSED!!!!
Any input would be greatly appreciated! Thankyou!
Kandace