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Looking for people who have dealt with MS 25+ years


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Old 07-29-2008, 09:10 AM   #46
Bearygood
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Re: Looking for people who have dealt with MS 25+ years

Oh, interesting. I never really knew his stance on treatment. The people I've run across who see him like him a lot but they're either on treatment or are PPMS. I wonder if it's because he's involved in so much research? On the other hand, a person I know who sees Apatoff said he's been supportive of her choice to not take a DMD. I know he left Cornell recently but don't know where he went. At the end of the day, it's all so personal, isn't it? A doctor who's good for someone won't necessarily be the ticket for someone else.
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Old 07-30-2008, 11:09 AM   #47
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Re: Looking for people who have dealt with MS 25+ years

I am another one dx in 1985 I had alot of promblems at the the begging eyes- terrible vertigo- No use of my hands---at that time I was on and off 10 days of preizone ---found a new nero in 1995 he put me on complete bedrest and avonex went through menapause and by 1997 i was walking without assistance I have high regard for avonix
although 2007 I lost complete use of my legs and was in a wheel chair for the summer(lots of stress that spring)
now I'm using a cane on bad days I didnt bounce back to where I was(not unusual) thought about trying another med??? but I hate needles --so once a week is better for me + I had only a month of adjusting to the avonex so it works for me IT IS STRESS that doesnt work for me

 
Old 07-30-2008, 03:55 PM   #48
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Re: Looking for people who have dealt with MS 25+ years

Hi. I've been dx'd for 26 years and have not taken any of the meds for it, also b/c of the needle fear. I went into remission for 10 yrs. after getting pregnant. Now for the past 6 yrs I'm slowly declining. Using walker around the house and looking into getting a scooter. It is mostly weak legs and slight left arm and hand weakness I am also participating in an experimental drug study, double blind. Not seeing any results yet. Also I'm going to be getting a divorce after 25 yrs. :-(
I'll try to be on here a little more often.............
Laura

Last edited by alleemae; 07-30-2008 at 03:57 PM.

 
Old 07-30-2008, 04:20 PM   #49
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Re: Looking for people who have dealt with MS 25+ years

Oh, Laura. I'm sorry to hear about the divorce and also how you're feeling.

Which study are you in? Glad you came to visit!
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Old 08-02-2008, 09:17 AM   #50
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Re: Looking for people who have dealt with MS 25+ years

Laura----divorce--BIG TIME STRESS--best medicine REST REST REST and stay cool--emotionally and phisically
good luck--koz

 
Old 08-02-2008, 01:25 PM   #51
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Re: Looking for people who have dealt with MS 25+ years

Quote:
Originally Posted by alleemae View Post
Using walker around the house and looking into getting a scooter. It is mostly weak legs and slight left arm and hand weakness I am also participating in an experimental drug study, double blind. Not seeing any results yet. Also I'm going to be getting a divorce after 25 yrs. :-(
I'll try to be on here a little more often.............
Laura
I would use a power chair. I tried a scooter before and found that it was not very maneuverable. When you are selecting a power chair, you should think about where you will be in five years with your MS. As about 90% of my time indoors is in a power chair, I have Synergy seats. I have never been sore or sweaty with the Synergy seating.

Sorry to hear about your divorce. You are in my prayers.

 
Old 08-05-2008, 12:53 PM   #52
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Smile Re: Looking for people who have dealt with MS 25+ years

Quote:
Originally Posted by pepper55 View Post
Hi everyone, I have had MS for over 25 years now. I was diagnosed before MRI's, and long before any of the drug therapies. I was recently put on Avonex, and am having a hard time both justifying taking this med, but also dealing with the way the med has affected my quality of life. I am more fatigued now, frustrated at having to loose a complete day or more out of my week because of the flu like symptoms... I went from taking no MS meds, to now having to take Amantadine for the fatigue and Lexapro for the depression which I think are both worse because of the Avonex. Are the DMD's effective in later stages of the disease? I am able to function, my disablities are mostly subjective (vision blurriness, depth perception), with occasional clutziness in my walking. I have tried Copaxone, but had an allergic reaction to it. With Avonex only having a 1/3 effectiveness in slowing the progression, and having already lived through the active first ten years of it, I am having a hard time paying the price of the side effects each week. I am interested in your thoughts about the MS meds.

 
Old 08-05-2008, 12:53 PM   #53
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Quote:
Originally Posted by pepper55 View Post
Hi everyone, I have had MS for over 25 years now. I was diagnosed before MRI's, and long before any of the drug therapies. I was recently put on Avonex, and am having a hard time both justifying taking this med, but also dealing with the way the med has affected my quality of life. I am more fatigued now, frustrated at having to loose a complete day or more out of my week because of the flu like symptoms... I went from taking no MS meds, to now having to take Amantadine for the fatigue and Lexapro for the depression which I think are both worse because of the Avonex. Are the DMD's effective in later stages of the disease? I am able to function, my disablities are mostly subjective (vision blurriness, depth perception), with occasional clutziness in my walking. I have tried Copaxone, but had an allergic reaction to it. With Avonex only having a 1/3 effectiveness in slowing the progression, and having already lived through the active first ten years of it, I am having a hard time paying the price of the side effects each week. I am interested in your thoughts about the MS meds.

 
Old 08-05-2008, 01:00 PM   #54
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Re: Looking for people who have dealt with MS 25+ years

I have had MS for thirty years. Just the past five years has it kept me from leading a normal life and doing all the things I use to do. I tried Avvonnex in 2002 and then a drug study trail in 2003. The drug trail helped but is still in the research phase. Hopefully it will get approved while it will still help me. I do get tired of people telling me how lucky I am to still be doing as good as I am for having this desiase for so long. My life has gone down hill and I need my health to take care of myself. Don't really have anyone else to depend own. I could sure use some guidance in this journey.

 
Old 08-05-2008, 01:14 PM   #55
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Re: Looking for people who have dealt with MS 25+ years

Laura.

I feel your pain. I too have recently been divorced and the man I started seeing could not handle my disabilities. I understand his point view, but it really does not make it hurt less. I feel that I will never find someone to share my life with under these circumstances. I am just working and trying to build my life and pray that something will come alone and help all of us.

 
Old 08-05-2008, 02:54 PM   #56
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Re: Looking for people who have dealt with MS 25+ years

Hi Indians1974!

Welcome to our cyber family, you can always depend on us to vent, ask questions, or anything. I would suggest that you start your own thread introducing yourself so everyone will see you.

I'm sorry you're not doing well now. As someone who's had MS for thirty years, I'm sure you have a lot of insight to offer us! I was diagnosed last September, and this board saved me--it still does! You're never, ever alone here. I'm looking forward to getting to know you!
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Old 08-05-2008, 06:36 PM   #57
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Re: Looking for people who have dealt with MS 25+ years

Hi, indians, and welcome. I'm very sorry to read that you've been going through a rough time and hope that the board will offer you some support.

Quote:
Originally Posted by indians1974 View Post
I have had MS for thirty years. Just the past five years has it kept me from leading a normal life and doing all the things I use to do. I tried Avvonnex in 2002 and then a drug study trail in 2003. The drug trail helped but is still in the research phase. Hopefully it will get approved while it will still help me. I do get tired of people telling me how lucky I am to still be doing as good as I am for having this desiase for so long. My life has gone down hill and I need my health to take care of myself. Don't really have anyone else to depend own. I could sure use some guidance in this journey.
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Old 08-06-2008, 09:29 AM   #58
kozzleme
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Re: Looking for people who have dealt with MS 25+ years

I m 25+ also and for 20+ I heard "you have MS?? you dont look like it" NOW for the past 2yrs they can finally see MS
reading your thread on living a lone----I sometimes wish I was a lone
I become such a burden and my family are sooo helpful
I have been thinking of starting a stronger med--do you think these meds loose their potency??? or give it another year maybe Ill get back to my walking stick and can put the cane in the back of my closet
koz

 
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