My Update: Over a Year Now...

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My Update: Over a Year Now...

Postby LiquidSkin » Tue Jun 09, 2009 2:59 am

Well, I was Dx in Feb 08 with this craziness,

I have been off betaseron, for 7-8 Months now, and not really taking anything. Stupid I know, but a part of me just doesnt wanna deal with all the annoyance of counting pills out and taking them just to feel worst than I did before.

the Numbness that started this , is all but gone now, hot and cold still missing in my right leg but that is slowly getting better. I think,

No pain or anything to think of that bug me, no real symptoms since the first attack in Feb 08,

I find myself very lucky though, i hear so much about people having attacks and having a rough first year, and rough days that are just sometimes hard to handle,...I dont have any of that yet, I mean im a little tired here and there but....I work at 430 am, and get less than 5 hours sleep each nite, so a nap now and then is normal I think

Not seeing a Neuro, or any Doctors anymore, again, I just cant stand them talking to me like everyday will be the end of the world if I dont do this, or take all this medicine that i prolly dont need.

So, I have updated the progress of me, and I hope that me not having an attack at all since I was Dx gives others hope that the first year will not be the end of your world. Even though for a while it might seem like it
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Postby daverestonvirginia » Wed Jun 10, 2009 12:52 am

you might want to consider at least starting something like the Best Bet Diet. It is great to hear you had a mild first year, but now is the timeto start on a diet before things take a turn for the worse. Now I am not saying they will take a turn for the worse because all of us with MS know just about anything can happen at any time good or bad. It is just I really believe in the Best Bet Diet and the corresponding vitamin routine especially vitamin d. But, if you wait anothr 4 or 5 years before you start with the diet and your MS takes a turn for the worse you will have lost that head start. I relize everyone of us with MS needs to make our own decisions on treatment, but my advice would be not to wait start now while you ar doing well.
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Re: My Update: Over a Year Now...

Postby Wendigo » Wed Jun 10, 2009 6:32 am

LiquidSkin wrote:Well, I was Dx in Feb 08 with this craziness,

I have been off betaseron, for 7-8 Months now, and not really taking anything. Stupid I know, but a part of me just doesnt wanna deal with all the annoyance of counting pills out and taking them just to feel worst than I did before.

the Numbness that started this , is all but gone now, hot and cold still missing in my right leg but that is slowly getting better. I think,

No pain or anything to think of that bug me, no real symptoms since the first attack in Feb 08,

I find myself very lucky though, i hear so much about people having attacks and having a rough first year, and rough days that are just sometimes hard to handle,...I dont have any of that yet, I mean im a little tired here and there but....I work at 430 am, and get less than 5 hours sleep each nite, so a nap now and then is normal I think

Not seeing a Neuro, or any Doctors anymore, again, I just cant stand them talking to me like everyday will be the end of the world if I dont do this, or take all this medicine that i prolly dont need.

So, I have updated the progress of me, and I hope that me not having an attack at all since I was Dx gives others hope that the first year will not be the end of your world. Even though for a while it might seem like it


I'm a few months ahead of you on this road, just got the right leg numbness last month in what was my second "attack" last month. I'm more and more convinced with time that at least in my own case the MS started before the first attack in August 2007, maybe even years in the form of fatigue. I've been on Betaseron since January 2008, hate it, and have often wondered if I'm poisoning myself with this drug with no benefit but just don't know it. The bottom line I guess is whether I want to choose to have faith in statistics or not. It's not that I hate Betaseron per se, I hate the fact that I must take anything. At 52, if I were to religiously follow "doctors' orders" my the context of my life would be that of my almost 90-year-old father - medicine, following up with referrals to specialists, probably a psychiatrist, support groups, etc.

You've gotten 7-8 months of quality time - I hope it continues for you.
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Postby lionheart » Wed Jun 10, 2009 11:22 pm

Hi, Liquidskin! I have heard that the beneficial effect of interf. continue for some time after stopping it, anyway I really hope you'll be fine for much, much longer than 7-8 months.
I hate the drug myself and have been thinking lately whether stopping it would cause any big damage, as these drugs are pure poison. I have also been wondering how do we know we are ok due to the therapy and not to the natural course of desease.

On the other hand, since I've been injecting myself I am feeling a lot better, not that I was much worse before....but for example had incidents of double vision whenever I got tired. That is gone now.
I am not sure whether I would dare to cut the treatment....although the idea is tempting.

Why did you stop betaseron?
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Postby LiquidSkin » Fri Jun 12, 2009 1:53 am

Well, I decided to cut Betaseron, cause I jus didnt feel right taking it. But that wasnt a good enough reason for my mother, so I had a blood test to check my liver enyzmes (I was up for it anyway, being on Betaseron, it is a standard test) well my enyzmes came back really high. I wasnt seeing a Neuro anymore, but I knew that have liver enymes that high isnt good. Did a little research on what I was suppose to be at just to make sure I wasnt jumping the gun. and the i just stopped taking the shots.

You have to listenin to your body tho, that is one thing I am slowly getting the hang of. If it feels wrong to take Betaseron, there are other opinions, I mean jsut reading on here, there are few people on here still taking betaseron, so...

Now becafeful with Neuro tho, I asked to switch off long before I was feeling horrid on it, because I had read on here about different drugs and stuff, and I was like I wanna be on this one....and he was like...well you need to try all these before your insurance will approve the other one...
(note : one of the reason I dont got to that neuro anymore)
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Postby peekaboo » Fri Jun 12, 2009 6:06 am

re: liver enzymes...

Check into takin milk thistle...it is a great liver supporter, detoxer
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