Originally posted by TheBeans
View Post
Announcement
Collapse
CHANGES AT MSWORLD - MSWORLD'S CLOSURE
We began with a mission and purpose to help others living with MS.
We were excited to get going!
And hit a few bumps along the way…
However, in all seriousness, we remain grateful for our amazing volunteers, members & all who have made MSWorld a valuable resource for all!
July 10, 2024, we celebrated the goodness of these past 28 years. With a heavy heart, we will be ending our services.
We need a financial miracle to keep going forward.
We thank all for your support.
MSWorld's website will close on October 16, 2024.
“I personally want to wish all of you the guidance to find this type of support, as so many do here. Also, my prayers and love extends beyond my understanding. It has been a pleasure to steward this journey.”
God Bless you, Kathleen
Kathleen Wilson
Founding President
❤️
we leave knowing that
we did our best and
stayed true to our mission and purpose.
Please visit our General Questions and Answers forum to read more.
We were excited to get going!
And hit a few bumps along the way…
However, in all seriousness, we remain grateful for our amazing volunteers, members & all who have made MSWorld a valuable resource for all!
July 10, 2024, we celebrated the goodness of these past 28 years. With a heavy heart, we will be ending our services.
We need a financial miracle to keep going forward.
We thank all for your support.
MSWorld's website will close on October 16, 2024.
“I personally want to wish all of you the guidance to find this type of support, as so many do here. Also, my prayers and love extends beyond my understanding. It has been a pleasure to steward this journey.”
God Bless you, Kathleen
Kathleen Wilson
Founding President
❤️
we leave knowing that
we did our best and
stayed true to our mission and purpose.
Please visit our General Questions and Answers forum to read more.
See more
See less
At what age did you stop taking a DMD?
Collapse
X
-
~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
-
It was about ten years ago when I was about 48 that I stopped taking anything. I too never had relapses, and have steadily gotten a little worst. My nero figured I had advance to SPMS.
I just had a MRI done in July. Really no changes. If anything my nero thinks a couple of the lesions have shrunk a little compared to 5 years ago. Have no idea how this would have happen. She thought my left leg was a little stronger too. For this I have a answer, I started elec-stim on my hamstring and thighs back around July.
I was dx'd in 1994 was on Beta for seven years, than Avonex for couple, Rebif for a couple and than tried Tysabri for 8 months wasn't doing anything for me so I quit taking it and have not been on anything since.
I still walk short distances with forearm crutches and the help of a HFAD. Use a scooter a GOGO (can't carry anything with the crutches) in house, and electric chair for walking the dog and neighbors and have a bigger scooter for in the yard. The bigger tires on the chair spin in the grass and the treads fill up with dirt. I used to collect cars and now it's scooters.
Comment
-
Originally posted by 90stangg View PostI just had a MRI done in July. Really no changes. If anything my nero thinks a couple of the lesions have shrunk a little compared to 5 years ago. Have no idea how this would have happen.
My Neurologist told me they see improvement in MRIs in patients that use the treatments as well as those that don't use the treatments. There have been drastic changes in my MRIs going from too many to count lesions to a very countable 2 in the cervical spine. I have never used any of the DMDs/DMTs.Diagnosed 1984
“Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic
Comment
-
I Asked MS soecialist
I asked my doctor his opinion on patients of a certain age (ahem!) discontinuing DMTs. His response? "Everyone is different."
He didn't exactly go out on a limb there now, did he?!Tawanda
___________________________________________
Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994
Comment
-
Originally posted by Tawanda View PostHe didn't exactly go out on a limb there now, did he?!
Your doc seems somewhat unwilling to have a conversation with you about it?~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
Comment
-
Asked my Neuro last year when I was worried about drug costs. He said he wouldn't recommend it.
Now I'm back in the same boat again. I'm scared to death to stop or change meds since I've been relatively stable for over 20 years. But I'm sick and tired of worrying about the cost.
Wish we had more data. This thread helps. Glad for all the posts!
Comment
-
Originally posted by Golgotha View PostOne MS-specialist neurologist/doctor's view on this idea, FWIW. A 5 1/2 minute video.
I've been leaning towards considering going off within the next year or so.
I'm 57. My most recent MRI indicated that I had 3 new lesions between 2013 and 2018. Based on symptoms, both my MS specialist and I suspect they occurred during 2014; I had two flares that year.
Dr. Boster's recommendation to continue meds has me re-thinking that. My doc is comfortable leaving the decision up to me. She'd monitor with more frequent MRIs for five years.~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
Comment
-
Originally posted by Mamabug View PostYour doc seems somewhat unwilling to have a conversation with you about it?Tawanda
___________________________________________
Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994
Comment
-
Originally posted by Leenyi View PostWish we had more data. This thread helps. Glad for all the posts!Tawanda
___________________________________________
Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994
Comment
-
Originally posted by Leenyi View PostWish we had a crystal ball or a little more data!~ Faith
MSWorld Volunteer -- Moderator since JUN2012
(now a Mimibug)
Symptoms began in JAN02
- Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
- In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08.
- Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
- Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.
Comment
Comment