It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 01-16-2008, 04:43 PM   #1
Senior Member
(female)
 
Join Date: Jul 2007
Location: USA
Posts: 103
MS for life HB User
Can MS go into Remission?

Hey guys, I am newly diagnosed and in talking to people about it, I have twice been told of people going into "remission" with MS. The first went through chemo and now it is GONE. The second was on Betaseron for two years and has now gone off of it because the doctor said her MS was in remission and she did not need it anymore. I looked at my husband and said, correct me if I am wrong, but didn't the MS Specialist just yesterday say that I have MS, it is not a death sentence, but I will have it the rest of my life. He hoped in a few years I can start taking the meds orally, but for now I need to get used the idea of using one of the injectibles? He agreed.

I know I will be hearing a lot of different things, but I find it difficult to tell someone that is trying to be helpful that they are wrong and in the second case, I know the person they were talking about and feel maybe I should be calling her and telling her she should maybe be seeing another neurologist if he/she is telling her that.

Just wondering if anyone else has encountered this.

 
Old 01-16-2008, 05:12 PM   #2
Senior Veteran
(female)
 
Join Date: Apr 2007
Location: New York, NY
Posts: 2,162
Bearygood HB UserBearygood HB User
Yes, MS can go into remission but does not disappear

Quote:
Originally Posted by MS for life View Post
Hey guys, I am newly diagnosed and in talking to people about it, I have twice been told of people going into "remission" with MS. The first went through chemo and now it is GONE.
At the present time there are 4 categories of MS. The most common type is called "Relapsing Remitting". By definition, there will be periods of remission in this type of MS. Some may have the same symptoms that linger or they may even disappear but it does not mean the disease is gone. The person who had chemo may have stablized and it sounds like there are no new lesions. That's a great thing and let's hope it stays that way forever but it does not mean that person does not have MS. Whether or not the disease truly progresses, it is considered a progressive disease for which there is presently no cure.

Quote:
Originally Posted by MS for life View Post
The second was on Betaseron for two years and has now gone off of it because the doctor said her MS was in remission and she did not need it anymore.
Hard to believe that a doctor would say that, at least for that reason. It may be because she is not experiencing any progression that is noted by either new lesions (which clinically denote disease activity) and either mild or no symptoms and they reached that decision together. I've seen many people who make the decision to go off medication because they seem to be doing quite well (and in some cases better) without it but again, no, the disease is NOT gone. You are always taking a chance, with or without medication. There are no guarantees with this disease and even when someone does well with MS drugs, there is essentially no way to really "prove" it's the medication that made a difference. For ALL of us, it might just be the natural course of our MS. Some have few problems, even without medication and others follow a different course. Any honest neuro who is adamant about drugs will tell you that it's a crapshoot either way. That said, many neuros and MS patients believe in using every potential weapon that is out there right now to fight the disease; that being using one of the DMDs.

What your MS specialist told you is correct. At least at this point in time, the disease is lifelong.

As far as drugs go, whether to go on them or to stay on them is a personal choice.

Last edited by Bearygood; 01-16-2008 at 07:01 PM.

 
Sponsors Lightbulb
   
Old 01-16-2008, 05:25 PM   #3
Senior Veteran
(female)
 
Join Date: Nov 2007
Posts: 937
Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
Re: Can MS go into Remission?

Yes, there are remissions, for some. Also known as relapsing/remitting MS. However, remission does not mean your MS goes away - MS is for life

Remission in MS is not the same as remission with cancer. In cancer remission means the cancer is gone that's not the case with MS.

With MS some will have symptoms that come and go, symptoms that completely go away and some that remain but your symptoms are not as bad as when your having a relapse - welcome to remission.

You can come out of remission (relapse) at any time and this disease can knock you on your butt without a reason.

You would probably be doing your friend a favor in telling her to find a different neuro, he's not the brightest Dr. Using the DMDs are a choice but for a neuro to tell a patient they are in remission so they don't need to be on Betaseron is irresponsible.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Old 01-16-2008, 06:01 PM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,707
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Can MS go into Remission?

I agree with both Bearygood and Snoopy and wanted to add that the doctor who told your friend this, is being irresponsible; however, are you 100% sure that your friend isnt just hearing what she wants to hear?

I have been on Rebif (one of the disease modifying drugs) for 15 months now. Ive had 3 MRIs during this time and no new lesions have presented..keeping in mind that I had over 50 of them when I was diagnosed. My initial symtoms which brought me to the ER hysterical (and a very quick diagnosis) were tingling (severe) in my left hand and a small amount of foot drop. Looking back, I can add extreme fatigue as well as dizziness, balance problems to the mix but at the time didnt equate it with having had MS....at this time, not ONE of my symptoms has gone away, however no new ones have developed....and when I do have a very stessful day or suffer extreme fatigue they do appear to be worse than usual, only to get back to what I consider their normal state after a good nights sleep...so, is that remission? I dont know. I woud like to think it is, in the sense that nothing new is really going on. I stil go to work each day and take care of my familiy- cook, clean and run errands like a nut. Im in sales, and my job is very demanding...I manage, even with the bad days...but remission? I dont know if once you have MS you ever truly feel 100%...you just really are grateful for the good days.

Side note: disease modifying drugs are a very personal choice. I have the type of MS Specialist who is brutally honest, telling me that there is no absolute certainty that they are going to keep my disease from progressing; however he was also adamant that if I was positive I didnt want to get worse, there was no harm in trying them. I decided to be extremely proactive with my meds and I only take Rebif, which is one of the stronger ones out there...all I can say is after the intial getting used to giving myself injections, and getting past the intial side effects of geting used to the drugs- I dont mind being on the Rebif at all as long as my MRIs keep showing up with no changes!!!

The oral drugs you are talking about arent available yet..there are many trials going on right now and we ALL hope that they release these drugs sooner than later; however in the meantime, if you really research the drugs your doctor have mentioned (there are only 5 on the market: Avonex, Copaxone, Rebif, Betaseron and Tysabri) youll make up your own mind about whehter this is something you want to do now or not....feel free to post questions about any of them..we have members who are taking or have taken them all!

best of the best to you..
Nikki
__________________
RRMS- dx 05

 
Old 01-16-2008, 08:32 PM   #5
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Can MS go into Remission?

I was diagnosed in 1982 and enjoyed remission from 1985-2002. I have never used meds. My neurologist has a patient who enjoyed 35 years of remission.

My original neurologist (1982) said that DMDs were unnecessary. He allowed DMDs, but said they were unnecessary if no symptoms had presented for 2 years or more.

I think that you will come across many differing opinions amongst doctors.

Last edited by MSJayhawk; 01-16-2008 at 08:37 PM. Reason: add

 
Old 01-17-2008, 12:02 AM   #6
Senior Veteran
(female)
 
Join Date: Apr 2007
Location: New York, NY
Posts: 2,162
Bearygood HB UserBearygood HB User
Re: Can MS go into Remission?

Quote:
Originally Posted by MSJayhawk View Post
I think that you will come across many differing opinions amongst doctors.
The view has changed since 1982 and at that time, these drugs were not even available. But in any event, this is still a much different thing than a doctor that is less aggressive taking a wait and see approach in the first place.

It's an absolute contradiction in terms to put someone on a DMD in an attempt to reduce lesion load and relapses and then take them off them because the drug is doing what it's supposed to do. The goal is to bring on remission by taking these drugs -- doctors who believe patients should take meds will say that the drugs are doing their job, even though we really know there is not way to prove that beyond a shadow of a doubt. As I said before, I suspect it may have been a discusson that was not relayed properly but for a doctor to say you don't NEED them anymore because you're in remission?

I'm with Snoopy. If that's what they really said, new neuro needed! (And this comment is coming from two people who are NOT on DMDs!!!)

Last edited by Bearygood; 01-17-2008 at 12:15 AM.

 
Old 01-17-2008, 05:58 AM   #7
Senior Member
(female)
 
Join Date: Jul 2007
Location: USA
Posts: 103
MS for life HB User
Re: Can MS go into Remission?

Thanks guys, I think the word remission was what was getting me and to be clear, this was a third party transmission and not directly from the patient. I will definitely talk directly to the friend (not a close one but more of an acquaintance). I wish I had thought about the word "remission" before both conversations. I know they were both referring to it as in cancer, as in it may or may not return, but looking on the bright side, assuming it meant the MS was gone. I don't usually argue an issue unless I am comfortable with the discussion and this threw me off to a point where I just said, oh that's great and shut up. I can now have a more informed conversation with both and also directly to the one who's doctor (supposedly) took her off the meds, saying she was cured.

I guess I get caught between reactions when I have told someone. I am either getting the "oh you're going to die or at the very least end up in a wheelchair" to "MS, no big deal anymore, you'll take a few drugs and be fine". I would like a little in between, such as "the drugs may be hard on you, but in the end it is a good choice" and "we'll be supportive of your symptoms, but know you don't really want pity". For this reason, I am leaning towards Copaxone because I don't feel like anyone has time for me to have any side effects from the other ones, and on top of the symptoms that are already disrupting my life, I'm not sure I can smile through both. Well, in reality my smiling is not really there anymore because I just quit complaining about the problems I'm having and have instead turned into a grump.

If I'm complaining too much, I apologize. I think this is just turning out to be one of those days where the MS is getting me more negative than positive. Tomorrow should be a better day.

 
Old 01-17-2008, 07:10 AM   #8
Senior Member
(female)
 
Join Date: Jul 2007
Location: USA
Posts: 103
MS for life HB User
Re: Can MS go into Remission?

Boy after my second cup of coffee, I read my own post and hope I did not come off too negative. The comments were very helpful. I'm taking a little time this morning and putting the family and business on hold to regroup and clear my head (as much as the MS will allow) and prepare to move forward. I'm definitely thinking a little more communication amongst my family would be a good start. I shouldn't say they don't understand or care, when I really have been masking my feelings to keep an even keel. Thanks for the help guys.

 
Old 01-17-2008, 08:32 AM   #9
Senior Veteran
(female)
 
Join Date: Apr 2007
Location: New York, NY
Posts: 2,162
Bearygood HB UserBearygood HB User
Re: Can MS go into Remission?

Your comments did not come across as negative. It's ALLLLL a learning curve and having reason to have this conversation in the first place gave you the occasion to consider this. It takes time to get to a place where you can accept MS as part of your life and in what way. The learning helps --and it does not stop -- for any of us!

IMHO, MS is a big deal but it doesn't mean you won't be fine. It is a chronic illness with no present cure. So far they know WHAT happens but not why. Some patients will do okay to well without any type of medication and some will do the same with medication and then there are some who won't. Some people seem to respond well to a particular DMD and not others and some won't. There is interesting genetic research going on that may explain why but for right now, it's a little trial and error.

 
Old 03-10-2009, 07:09 PM   #10
Newbie
(male)
 
Join Date: Mar 2009
Location: Albany, NY
Posts: 4
siamusnomore HB User
Re: Can MS go into Remission?

the doctors are working on remission but I'm praying to be cured. My fight with this thing has led me to my faith. Hey, God is the great physician, so it can happen. It might not be tomorrow, next week, next month or year...but I'm going to be better. I think the betaseron is doing it's job but my current progress seemed to be amazing to my nurse today. I wonder if this thing is even MS, I have a theory of it being by caused by something in the basement because that's where I was most of the time when home. Whatever it is...whether it's MS or something else. Whatever it is, I seem to be getting better! Thank you Jesus!

Last edited by siamusnomore; 03-10-2009 at 07:11 PM.

 
Old 03-10-2009, 07:25 PM   #11
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Can MS go into Remission?

Quote:
Originally Posted by siamusnomore View Post
the doctors are working on remission but I'm praying to be cured. My fight with this thing has led me to my faith. Hey, God is the great physician, so it can happen. It might not be tomorrow, next week, next month or year...but I'm going to be better. I think the betaseron is doing it's job but my current progress seemed to be amazing to my nurse today. I wonder if this thing is even MS, I have a theory of it being by caused by something in the basement because that's where I was most of the time when home. Whatever it is...whether it's MS or something else. Whatever it is, I seem to be getting better! Thank you Jesus!
Remission is generally the term to use rather than a cure, but I pray you receive a cure too. They have found environmental factors for Parkinson's, but have not yet found a trigger for MS.

Remission can last for 5 to 35 years or more OR less..... My original neurologist told me that he only considered remission after 5 years of no symptoms/flare-ups.

Stay faithful!! Sooner or later we shall leave our broken vessels behind!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 03-11-2009, 01:07 PM   #12
Newbie
(male)
 
Join Date: Mar 2009
Location: Albany, NY
Posts: 4
siamusnomore HB User
Re: Can MS go into Remission?

Thanks for the kind words. When you were diagnosed, were there even MEDs for it yet? How long have you been off the meds?





Quote:
Originally Posted by MSJayhawk View Post
Remission is generally the term to use rather than a cure, but I pray you receive a cure too. They have found environmental factors for Parkinson's, but have not yet found a trigger for MS.

Remission can last for 5 to 35 years or more OR less..... My original neurologist told me that he only considered remission after 5 years of no symptoms/flare-ups.

Stay faithful!! Sooner or later we shall leave our broken vessels behind!

 
Old 03-11-2009, 02:31 PM   #13
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,401
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Can MS go into Remission?

Quote:
Originally Posted by siamusnomore View Post
Thanks for the kind words. When you were diagnosed, were there even MEDs for it yet? How long have you been off the meds?
They had steroids at the time, but my neurologist did not recommend the steroids for his patients. I have never used meds. Just much prayer and faith!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 03-11-2009, 03:54 PM   #14
Senior Member
(female)
 
Join Date: Sep 2007
Location: Massachusetts
Posts: 131
Pens'nChalk HB User
Re: Can MS go into Remission?

Quote:
Originally Posted by MS for life View Post
I would like a little in between, such as "the drugs may be hard on you, but in the end it is a good choice" and "we'll be supportive of your symptoms, but know you don't really want pity". .
You've captured exactly what I've been silently wishing ... yes, I keep a positive mask on. But yes, it is hard at times. And yes, the medication is supposed to be helping (taking that on blind faith) but yes, while not complaining about it I wish people realized that it's hard to be grateful for something that is endless and hurts every time ...

But then I have to remember, I really don't want a lot of people to know that I have this ...

Thanks for saying this for me
__________________
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa

 
Old 03-12-2009, 12:31 AM   #15
Junior Member
(female)
 
Join Date: Mar 2009
Location: GLANDORE
Posts: 32
ArtyTart17 HB User
Re: Can MS go into Remission?

Hi, I was dx. with MS in 1984 after a smattering of weakness issues and then ON. Fatigue was and still is an issue. My family didn't want to know or help, I had three children all whilst having MS [unknown] and a lot of the symptoms I passed off as being a busy Mum. [Australian] I worked full-time until 1996. I was fired when my boss found out I had MS and this knocked my confidence and I have not worked full-time since. I sued but the tribunal was not very sympathetic as I was 'disabled' any way and I was paid $12,500. I have never taken anything other than prednisone - 2 exacerbation's in 22 years.
Then my sister was dx. with MS in 2002 - a major family tragedy - all assistance offered to her and this hurt me but hasn't killed me either. Her presentation was a spinal lesion and partial paralysis of the left side of her body. She was 39 at the time and decided as I had 3 children she could have one more herself, her other 2 children were adults by this time. MAJOR problems, baby had numerous health problems and she had 7 exacerbations in less than 6 months. She is taking Copaxone and now says that she has not got MS.
I saw my neurologist a few weeks ago and he said that although I am showing no symptoms and no more lesions since 1991, he feels it might be helpful for me to start taking one of the DMD's to keep my MS stable. It already is stable but he feels that as I age the chance of relapse may increase. He did tell me that any DMD may extend the time between relapse but he said that none of them cure MS. The MS no matter what kind you have will continue on its own path but maybe at a slower and less severe rate. Remission is merely the time between exacerbations [relapses].
I know my sister feels like she has the flu the day after her injection and a little better the next day but on day 3 she has to have the next injection. I have spoken to my Neuro about her case and he has told me, she will be on these injections for life, not just a few years. This drug is keeping her relapses at bay, without them she would be crippled quickly by this terrible disease.
Everyone is different but for now MS is a life sentence, whether you are fortunate like myself or not so, like my sister.
Any decision to use a DMD is yours and your Neuro's. Being in remission is normal for most people with this disease.

A DMD is a chance at a longer remission, which may have occurred anyway, no-one will ever know.

Love to all,

Tanya dx. 1984 fp. 1974 No meds currently.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Crps into remission and back again Guysgal Reflex Sympathetic Dystrophy (RSD) (CRPS) 5 10-29-2012 09:26 AM
Does bipolar go into remission? JJSalt Bipolar Disorder 0 03-24-2010 08:25 PM
How do people actually go into remission?!? sandy0224 Fibromyalgia 14 06-05-2008 04:39 AM
What Remission drugs have you been given? ddgryphon Fibromyalgia 4 07-16-2007 02:48 PM
Looks like i'm out of remission :( prairie_dawn Thyroid Disorders 5 02-06-2007 07:44 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (994), MSNik (522), Snoopy61 (58), Whimpurr (13), J-one (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Gullyabb (8)

Site Wide Totals

teteri66 (1164), MSJayhawk (999), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (667), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 03:43 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!