bleedingdove
12-06-2008, 10:58 PM
Is anyone else in this stage of Multiple Sclerosis? I've been on Betaseron, Interferon for years now, before I was diagnosed with PPMS when I still had the first stages of M.S. and it just seems that you'd need to go to another medication, with it changing to RRMS, so I'm just wondering if anyone else has any insight as to why they didn't change my meds two years ago (I just found this site), and if others have changed meds, what you changed to.
Thanks
Dove
Thanks
Dove
Sponsor
MSNik
12-06-2008, 11:06 PM
I have to say, first welcome to our board...but Im really confused. Who told you you were diagnosed with primary progressive MS? And why in the world would they put you on Betaseron for it? That doesnt make any sense at all....the interferon's are not approved for any stage of MS except Relapsing/ remitting...and Copaxone is having some studies done now for PP MS, which arent finsihed...
There are several drugs in clinical trials for PP MS, but few on the market...
SO, why are you on Beta? Who told you that its PP MS and NOT RR MS? And, are you absolutely certain of this?
Love to hear more about this....
nikki
There are several drugs in clinical trials for PP MS, but few on the market...
SO, why are you on Beta? Who told you that its PP MS and NOT RR MS? And, are you absolutely certain of this?
Love to hear more about this....
nikki
bleedingdove
12-07-2008, 01:25 AM
Sorry, RRMS, not PPMS, you made me look at my last letter to double check, and it is an R-relapsing, not P-progressive, sorry, but UCLA told me. They make me go through all the tests every single year, even the spinal tap or lumbar puncture, whatever you call it, mainly the MRI told them? I was diagnosed with the one you mentioned, and that is when I was put on Betaseron. That is kind of why I'm wondering why they put me back on it? Thanks so much for the welcome and the insight. "Copaxone is having some studies done now for PP MS, which arent finsihed..." Maybe that is why they haven't switched me yet, hopefully in March when I go back down, again.?!
I was originally diagnosed in 95 and I'm 36 now.
I was originally diagnosed in 95 and I'm 36 now.
MSNik
12-07-2008, 10:38 AM
Hi Dove. Stilll alittle confused by your post, but Ill try to help.
If I understand you right, you think you were dx with RRMS and put on Betaseron, but now you are saying that you think you have PPMS? Again, I ask you why you think that.
Its not a "given" that all forms of MS will progress. Its possible, but for you to go from RRMS to PPMS, would be very odd. Primary Progressive MS is usually diagnosed from the beginning- there are no remissions or times of inactivity with the disease, it is not the SECOND stage of MS but an original stage which never seems to ever take a break....less then 10% of people with MS are dx with Primary progressive. Now, if you have PPMS, you wouldnt be on any drugs at this time, nor would they be talking about switching you to any other disease modifying drugs which are currently on the market.
The other thought that I am having is that Betaseron, one of the oldest and most used Disease modifying drugs might not be working well for you at this point- maybe they are talking about switching you to one of the stronger drugs to see if it helps you more? Thats not so uncommmon, but doesnt change your dx from RRMS....if this is the case, then you might be having symtoms, or activity on your MRI? there would have to be a reason why they would switch you to another drug....Avonex is slightly stronger, Rebif, stronger then Avonex, but the same drug (both are different forms of Interferon's from what you take now) and then there is Copaxone. A synthetic drug which is not an interferon,but works in such a way that many have success using it.
Whats going on with you that they are changing your drug? Are you experiencing relapses? Activity? Who or why is giving you the idea that your MS has changed "status"? Its just not right that it could go from RR to PP... there is a stage called secondary progressive MS. This one starts with Relapsing Remitting- and can develope into SP. About 50% of people with RR MS wind up with Secondary Progressive at about ten years of diagnosis. I apologize but I cant remember how long you have been diagnosed. Has it been anywhere near that long? And, again, only half the people ever progress. If you get on a good drug, which works for you- theres still a very good chance you will never progresss beyond any stage other then R/R MS.
I wish you well...
Nikki
If I understand you right, you think you were dx with RRMS and put on Betaseron, but now you are saying that you think you have PPMS? Again, I ask you why you think that.
Its not a "given" that all forms of MS will progress. Its possible, but for you to go from RRMS to PPMS, would be very odd. Primary Progressive MS is usually diagnosed from the beginning- there are no remissions or times of inactivity with the disease, it is not the SECOND stage of MS but an original stage which never seems to ever take a break....less then 10% of people with MS are dx with Primary progressive. Now, if you have PPMS, you wouldnt be on any drugs at this time, nor would they be talking about switching you to any other disease modifying drugs which are currently on the market.
The other thought that I am having is that Betaseron, one of the oldest and most used Disease modifying drugs might not be working well for you at this point- maybe they are talking about switching you to one of the stronger drugs to see if it helps you more? Thats not so uncommmon, but doesnt change your dx from RRMS....if this is the case, then you might be having symtoms, or activity on your MRI? there would have to be a reason why they would switch you to another drug....Avonex is slightly stronger, Rebif, stronger then Avonex, but the same drug (both are different forms of Interferon's from what you take now) and then there is Copaxone. A synthetic drug which is not an interferon,but works in such a way that many have success using it.
Whats going on with you that they are changing your drug? Are you experiencing relapses? Activity? Who or why is giving you the idea that your MS has changed "status"? Its just not right that it could go from RR to PP... there is a stage called secondary progressive MS. This one starts with Relapsing Remitting- and can develope into SP. About 50% of people with RR MS wind up with Secondary Progressive at about ten years of diagnosis. I apologize but I cant remember how long you have been diagnosed. Has it been anywhere near that long? And, again, only half the people ever progress. If you get on a good drug, which works for you- theres still a very good chance you will never progresss beyond any stage other then R/R MS.
I wish you well...
Nikki
libybil
12-07-2008, 03:06 PM
welcome, dove!
like nikki sd, you can progress from RR ms to SP ms, but that doesn't always happen, some just stay RR all their lives. i started on avonex in 1995, was on it for 13 yrs, then had leg problems with it so my meuro switched me to rebif. now i get the same probs w/rebif, so i'll probably go to copaxone next month...she sd my body may have a problem w/interferon all of a sudden...but you should be on one
LibbY!
like nikki sd, you can progress from RR ms to SP ms, but that doesn't always happen, some just stay RR all their lives. i started on avonex in 1995, was on it for 13 yrs, then had leg problems with it so my meuro switched me to rebif. now i get the same probs w/rebif, so i'll probably go to copaxone next month...she sd my body may have a problem w/interferon all of a sudden...but you should be on one
LibbY!
bleedingdove
12-07-2008, 07:27 PM
Like my title said, sorry it is PRMS, you were right about the remitting. I've lost the use of one of my legs, and have "steady neurological decline" are some of the reasons they diagnosed it as PRMS (not PPMS, like I said, I read the second letter as a P and it was an R). I don't know, UCLA never answers my quetsions, they just do the tests and my doctor doesn't have 'time' to explain everything he feels needs done. That is why I'm questioning things to people who may know, because I'd like to know when I find my new doctor, I want to make sure I understand what is going on with my own body, besides what I can tell physically. I was diagnosed over 13 years ago, the major changes started about two to three years ago, but the loss of leg use was so gradual, then one day it was just kind of paralyzed, and now the other one is starting to go. This is why I have been trying to find a forum with people that know what I'm going through, I can 'read' the reports, (I use to be a registered nurse), but it doesn't sink in, or stay there any more, I can't even remember what I've read any more. I have to keep reading your post even. Thanks for your time and patience. I hope I'm making a little more sense to your questions, I'm not trying to be a pain, just understand things.
God Bless, Nikki.
Dove
God Bless, Nikki.
Dove
bleedingdove
12-07-2008, 07:30 PM
Libby,
Thanks, I'm just trying to keep all of this in my mind since the doctors really won't take the time to talk to me, but I'm trying to find a new neuro that has a little more patience and hopefully I'll remember more.
God Bless,
Dove
Thanks, I'm just trying to keep all of this in my mind since the doctors really won't take the time to talk to me, but I'm trying to find a new neuro that has a little more patience and hopefully I'll remember more.
God Bless,
Dove
MSNik
12-07-2008, 07:42 PM
Sweetie, I feel for you, I really do- but again, more confusion. There isnt anything called Primary Remitting MS.
The four stages of MS are:
Relapsing Remitting- the most common (85% of people with MS have it)- clearly defined attacks followed by partial or complete recovery of symptoms; usually given, interferons A and B (rebif, avonex, betaseron) or Copaxone, Glatimer Acetate and Tysabri.
Primary Progresive MS- continuously ongoing worsening symtoms, with no remission in between, no drugs at this time approved for PPMS but clinical trials in effect.
Secondary Progressive MS- after a period of Relapsing Remitting MS, the only stage that can come "next"; diagnosed by a worsening of symtoms, very little remission if any- and 50% of people who were originally dx with RRMS will progress to this level.
Progressive Relapsing MS- only 5% of people are dx with this type of MS. Neurological function worsens constantly, no remission and usually much faster progression. No drugs available to treat.
Since lots of us have different symtoms at different times, its really hard to know when we are progressing, or just having an attack or excaberation. In between times of feeling really bad, if we feel really okay- usually we are "in between" or "in remission".... I have had no feeling in my hand or fingers for 3 years now, its completely useless- and NO ONE KNOWS beyond my immediate family and husband- but Im still R/R MS. I havent progressed and the rest of my symtoms, the MS hug, the unbearable heat intolerance, etc all come and go randomly.
In your case, its not Primary Remittant, it could be Secondary Progressive- but there is almost no way its Progressive relapsing and youve had it for 13 years, so what is going on? Hard to say....you definately need to find yourself a good MS specialist to talk to, I have only two suggestions- contact your local MS society and ask for names of MS Specialists, or start a second thread here, and shout out asking for names of anyone in your area who people use/ recommend. You need to do something to get answers, though. YOu have now said several times that you are unhappy with the USCLA team you are dealing with, and you deserve to be happy with your care and treatment.
Please look for someone who can clarify this for you better- the MS society is usually very helpful, but the people here might know of someone as well who they can recommend. Unfortunatley, I am 3000 miles away. I cant send you to my docs, who I adore. But I am sending you health and wishes that you stay okay....
nikki
The four stages of MS are:
Relapsing Remitting- the most common (85% of people with MS have it)- clearly defined attacks followed by partial or complete recovery of symptoms; usually given, interferons A and B (rebif, avonex, betaseron) or Copaxone, Glatimer Acetate and Tysabri.
Primary Progresive MS- continuously ongoing worsening symtoms, with no remission in between, no drugs at this time approved for PPMS but clinical trials in effect.
Secondary Progressive MS- after a period of Relapsing Remitting MS, the only stage that can come "next"; diagnosed by a worsening of symtoms, very little remission if any- and 50% of people who were originally dx with RRMS will progress to this level.
Progressive Relapsing MS- only 5% of people are dx with this type of MS. Neurological function worsens constantly, no remission and usually much faster progression. No drugs available to treat.
Since lots of us have different symtoms at different times, its really hard to know when we are progressing, or just having an attack or excaberation. In between times of feeling really bad, if we feel really okay- usually we are "in between" or "in remission".... I have had no feeling in my hand or fingers for 3 years now, its completely useless- and NO ONE KNOWS beyond my immediate family and husband- but Im still R/R MS. I havent progressed and the rest of my symtoms, the MS hug, the unbearable heat intolerance, etc all come and go randomly.
In your case, its not Primary Remittant, it could be Secondary Progressive- but there is almost no way its Progressive relapsing and youve had it for 13 years, so what is going on? Hard to say....you definately need to find yourself a good MS specialist to talk to, I have only two suggestions- contact your local MS society and ask for names of MS Specialists, or start a second thread here, and shout out asking for names of anyone in your area who people use/ recommend. You need to do something to get answers, though. YOu have now said several times that you are unhappy with the USCLA team you are dealing with, and you deserve to be happy with your care and treatment.
Please look for someone who can clarify this for you better- the MS society is usually very helpful, but the people here might know of someone as well who they can recommend. Unfortunatley, I am 3000 miles away. I cant send you to my docs, who I adore. But I am sending you health and wishes that you stay okay....
nikki
bleedingdove
12-07-2008, 07:51 PM
I know secondary was mentioned and only about 10 years left for mortality in general cases. I'm just reading what UCLA wrote, sorry I'm having trouble understanding it too, but there is a 2ndary in the wording in the third paragraph and final paragraph, in the third one is where they talk about my 'general mortality'. So that is why I guess I thought they'd change my meds, even if I'm more or less going to die, more than likely in teen years, according to them. I don't know if coming here helped or confused my brain more. I do appreciate you trying to help though. Thank you.
God Bless.
Dove :angel:
God Bless.
Dove :angel:
MSJayhawk
12-07-2008, 08:13 PM
I would not worry about SPMS, PPMS, or whatever the doctors want to call it. The fact is that you have MS. Do not worry about your MS type, just work with your neurologist to plan an offensive that meets with your life. I have been Med Free since 1982 (26 years) and I have had MS for at least 30 years.
UCLA wanted to put me on meds in 2002. I forbade them and returned to Kansas where my doctor told me that UCLA's try to place me on meds would have done nothing for me.
Question your doctors at every step you make. Do not accept any decision from the doctor if you do not understand it.
BTW, only 10 years?? I think not. I am doing quite well, thank you. I plan to remain here for many years to come!!:angel::angel::angel:
UCLA wanted to put me on meds in 2002. I forbade them and returned to Kansas where my doctor told me that UCLA's try to place me on meds would have done nothing for me.
Question your doctors at every step you make. Do not accept any decision from the doctor if you do not understand it.
BTW, only 10 years?? I think not. I am doing quite well, thank you. I plan to remain here for many years to come!!:angel::angel::angel:
MSNik
12-07-2008, 09:36 PM
I honestly think Jayhawks attitude and advice are the best you can get.
I only tried to enlighten you about the stages of MS and how it can, or might not progress- but having only dealt with RR MS for 3 years, and having very little issues (in the grand scheme of things) I have to say, its people like Jayhawk who "KNOW" and "UNDERSTAND" and its guys like him, who really should be doling out the advice on this...
Go find yourself another Neuro- one you can work with, who you can truly understand and trust....and then live your life as fully as you can.
Sending you warm and happy thoughts.
nikki
I only tried to enlighten you about the stages of MS and how it can, or might not progress- but having only dealt with RR MS for 3 years, and having very little issues (in the grand scheme of things) I have to say, its people like Jayhawk who "KNOW" and "UNDERSTAND" and its guys like him, who really should be doling out the advice on this...
Go find yourself another Neuro- one you can work with, who you can truly understand and trust....and then live your life as fully as you can.
Sending you warm and happy thoughts.
nikki
bleedingdove
12-07-2008, 10:20 PM
Thank you, it takes me awhile to read because I'm losing my eyesight and as far as the 10 years, I do know that is a generality. Thank you so much for sharing your experiences, especially since you went to UCLA as well. I think Nikki and you are right, I definitely don't have the right team, I never have trusted them, I feel like they aren't telling me everything. Now with the loss of eyesight, I'm really getting apprehensive about anything I hear from them. That is why I came to find others who know and are dealing with it. I pray you keep doing well.
God Bless.
Dove :angel:
God Bless.
Dove :angel:
bleedingdove
12-07-2008, 10:23 PM
Thank you, sorry I'm so confusing, like I said, I just don't feel like I'm getting the whole story, that is why I was quoting the UCLA (useless) report to you, hoping it would help, but with the recent losing my eyesight, it obviously doesn't help if I can't tell a P from an R, so thank you. I will take all of your advice to heart and start looking for a new team.
God Bless.
Dove :angel:
God Bless.
Dove :angel:
Snoopy61
12-08-2008, 08:40 AM
Progressive Relapsing MS- only 5% of people are dx with this type of MS. Neurological function worsens constantly, no remission and usually much faster progression. No drugs available to treat.
Bleedingdove,
If I am understanding what you have posted PRMS is what your neuro has decided you are.
The most common MS "type" is Relapsing/Remitting (RR) which can then progress to Secondary progressive (SP).
It can take time for a neuro to give a diagnosis of PPMS or PRMS because it then becomes difficult if not mpossible to get insurance companies to pay for the MS drugs. There has not been any meds (at this time) that is Approved for PPMS or PRMS. Some do try the chemo drugs - with and without sucess.
It's very difficult for those with PPMS and PRMS to get any help med wise.
Bleedingdove,
If I am understanding what you have posted PRMS is what your neuro has decided you are.
The most common MS "type" is Relapsing/Remitting (RR) which can then progress to Secondary progressive (SP).
It can take time for a neuro to give a diagnosis of PPMS or PRMS because it then becomes difficult if not mpossible to get insurance companies to pay for the MS drugs. There has not been any meds (at this time) that is Approved for PPMS or PRMS. Some do try the chemo drugs - with and without sucess.
It's very difficult for those with PPMS and PRMS to get any help med wise.
april1848
12-08-2008, 08:24 PM
Welcome to the site, BleedingDove. And you're not a pain, we're glad to have you!
MS is confusing, especially when your doctors aren't helpful. I agree with the others; get a new MS specialist. It's not right that you have to try to decipher reports by yourself (especially if it's handwritten by a doctor!).
I hope your eyes improve enough that you can keep coming back here. Keep us updated on how you're doing, and I'll be thinking of you.
MS is confusing, especially when your doctors aren't helpful. I agree with the others; get a new MS specialist. It's not right that you have to try to decipher reports by yourself (especially if it's handwritten by a doctor!).
I hope your eyes improve enough that you can keep coming back here. Keep us updated on how you're doing, and I'll be thinking of you.