What does transitioning from rrms to spms look like for others??

[sunshine008]

Hi

I haven't been in here for a while, been trying to ignore the fact I have MS lol...that didn't work!

So, my question is, what does that transition from rrms to spms look like for others who have made that change over in our wonderful disease?

I've had a strange year, no relapses past year and a half, just increased bs, in it everyday, minimal new lesions on mri's, yet increasing brain atrophy in brain and especially brainstem.

so, heading to new neuro today yet was wondering what that was like for anyone else with spms?

[fishead]

[QUOTE=sunshine008;1454809]Hi

my question is, what does that transition from rrms to spms look like for others who have made that change over in our wonderful disease?

I've had a strange year, no relapses past year and a half, just increased ***, in it everyday, minimal new lesions on mri's, yet increasing brain atrophy in brain and especially brainstem.[QUOTE]

what you described is exactly how my Neuro knew I had "graduated" to SPMS

Welcome to this new avenue. The GOOD news is that I am NOT having the crazy "flares" anymore!!!

[sunshine008]

Thanks! no one else was answering me...

welcome aboard I guess, put my tray in the upright position and fasten the seat belt! ha

what do you take if you don't mind me asking? i'm starting copaxone today, they said if doesn't work than i can try tysabri.

[Thinkimjob]

It feels like a very slow decline. You know how you don't think about things, and one day you'll be doing something, and all of a sudden you notice you can't do that easily any more.

You'll be holding a glass and you'll notice how heavy it is, or how hard it is to get your mouth wrapped around a forkful of food. Everything just gets a little tiny bit worse.

My MRI five year's ago looks identical to the last one, but five year's ago I could walk down slopes and have a shower without having to psyche myself up first.

[Seasha]

This is so true Think! It is a very slow, but steady decline. For me, no more flares in years now, which I'm happy about, but my ability to do even what I could do 2 years ago is declining. I fit in that lovely category where they say, 90% of us will have SP after 25 years into it. Well, it's been 25 years this month!

Sunshine - it's great you haven't had in flare in 1 1/2 years! Let us know how your appt went.


From MEDhelp:
Recently we have had several people ask how one knows when you move from RRMS to SPMS. The first thing we must all know is that this is a somewhat subjective assessment that should be made by our neurologist. The second thing you need to know is that it is an assessment made on the basis of the patient's symptoms and disability - not on the basis of the MRI.

You can read more here: http://www.medhelp.org/tags/health_p...PMS?hp_id=1105

[sunshine008]

hi

appt went well, i'm switching neuro's she was a new one. i like her.

she's putting me on bacoflen for pain, amprya for walking, copaxone for disease. my bp is also really low, so we aren't sure what that's about gotta head to gp for that.

yea same thing here, when i think of what i could do even a year ago compared to now what a difference. yet i'm a pusher, always have been. so i keep pushing along, trying to do it all. i feel like a body in motion stays in motion sort of thing

[Marco]

Transition from RRMS to SPMS

Just like with diagnosing MS, some neurologists are more aggressive than others when suggesting a patient has transitioned from RRMS to SPMS. Unfortunately, the MS phenotypes sometimes cause more confusion than they are worth. There is no clinical, biological or objective measure used to move a patient from RRMS to SPMS. The MedHelp article used the term "somewhat subjective" to describe the assessment. Neurologists do not universally use the same scale; so while one neurologist may assess RRMS another might suggest SPMS. This is caused because different neurologist use and weigh criteria differently and because defining SPMS has been a moving target. Some of the variance can be explained by different schools of thoughts, differences in education, governing boards, length of time practicing, etc. The simple truth is different neurologists are using different measurements to diagnose the same condition.

The general premise is that over time more and more RRMS patients will transition into SPMS patients. These patients will basically have two stages of the disease. The first stage is largely depicted by inflammation, with regular periods of relapses and remissions. During this inflammation stage, improvement during periods of remission is expected and often complete. Most MS drugs are more effective during this predominantly inflammatory stage. The increased use of disease-modifying therapies has also had an impact on the RRMS to SPMS transition. DMTs are proving to alter the natural history of MS and even delaying the onset of SPMS. The second stage is characterized by less inflammation, fewer flare ups, and a steady worsening of symptoms and disability. In this stage, any symptom improvement is generally incomplete to and may not even be apparent. Normally, first-line drug therapies are abandoned for second-line drugs such as Tysabri, Rituximab, Novantrone, Methotrexate, etc. There is no exact transition point from RRMS to SPMS, so a variety of evaluation criteria is used. Some of the SPMS criteria used by neurologists include:

• EDSS/disability scale
• Medical history
• Relapse rate (especially the absence of relapses)
• Incomplete remissions or symptom improvement
• Gradual increase in disability or symptoms
• MRI evidence - accumulation of black holes, brain atrophy, etc.
• Benfits of medication
• The length of time diagnosed
• Age of the patient
• Insurance issues
• Patient feedback (I don't ever seem to improve.)

How the above and other criteria are applied are at the discretion of the neurologist. One neurologist may have a minimum EDSS score or minimum age for patients categorized as SPMS. The longer a patient has been diagnosed with MS, the easier it becomes to diagnose SPMS. In some cases, a patient may go move into the SPMS category before they were ever diagnosed with MS. I know I was diagnosed 20+ years after my initial MS symptoms. Your neurologist will undoubtedly have their own criteria for diagnosing SPMS.

Examples of how criteria may be applied:
• A 12-year old, may be diagnosed with MS, but a neurologist might otherwise be hard-pressed to diagnose SPMS due to their young age.
• A patient's MS has been stable on drug X for 12 years. Then the patient begins to have disease progression. Some neurologists will consider that to be evidence the patient is leaving RRMS and entering SPMS.
• A patient has had bi-annual relapses for many years. Then for a period of 4 years, no relapses are observed.
• A patient's insurance plan does not cover medications for SPMS patients.


I would certainly ask my doctor why did they transfer me from RRMS to SPMS and how will this change my treatment plan? Changing MS types could be considered one of the possible major MS milestones. As with all medical milestones, a second opinion might be advisable. For others the SPMS label may seem like a better fit and actually provide some level of comfort.

[Dayna]

Yup, slowly...so very true, but at the same time scary due to all the past experiences. It all started 27 years ago and I haven't had a flare up in over 2.5 years, but what controls my life now is the extreme fatigue and my atrophied legs that make it difficult to walk. And my social life stinks because of it.

[sunshine008]

HI

It was my second opinion, yet it doesn't really matter to me where I"m at or not... as you said they all use different criteria and at the end of the day it doesn't really matter. I just know I have to treat it and can't use my natural remedies anymore even though in my mind they were working! ha..

thanks for all the great info though....i really appreciate it. i think it kinda makes sense though, because i've had it for so long and i don't relapse anymore

[fishead]

Thanks! no one else was answering me...

welcome aboard I guess, put my tray in the upright position and fasten the seat belt! ha

what do you take if you don't mind me asking? i'm starting copaxone today, they said if doesn't work than i can try tysabri.

Sunshine

Currently I am on NOTHING. I went off of everything in
at the end of 2011, then went on aubagio earlier this year, but it was causing such palpatations I decided to get off of it.

Not sure what my future will be, but everything HAS slowed, considerably.

[fishead]

Sunshine,

I see others answering/responding in a BIT of a negative way....(MY interpretation-I am NOT judging). The way I SEE my SPMS is this = it is not as HARSH. I find that it is much easier to prepare a defense against the aggravating things. Do I realize it IS a steady progression? OH YES! I am no fool, but I find this much easier to deal with.

I am glad you like your new Neuro and she is giving you something for pain. That is SUCH a good thing!!

Stay strong, my "MS sister"

[sunshine008]

hi

thanks everyone for taking the time to answer...

I"m not really afraid anymore, was a bit shocking at first..yet i'm good now.

the pain is worsening though at night, just wrote post about it.

i tried the copaxone, throat closed, chest tight had to run to get benadryl in middle of night. than my emotions became off the wall, really weird. so neuro said to stop it for now.

id' love to keep floating on nothing, yet they say i'm progressing and we have to slow it down and i dont' know how else to do that.

i'm still working on getting the weight off from bg12 that landed an extra 18 pounds on my body from being on it for 4 mos. sucks!

[BigA]

It feels like a very slow decline. You know how you don't think about things, and one day you'll be doing something, and all of a sudden you notice you can't do that easily any more.

You'll be holding a glass and you'll notice how heavy it is, or how hard it is to get your mouth wrapped around a forkful of food. Everything just gets a little tiny bit worse.

My MRI five year's ago looks identical to the last one, but five year's ago I could walk down slopes and have a shower without having to psyche myself up first.

That's the frightening bit, isn't it? I felt "something" recently, but nothing on MRIs. Question: Do you have atrophy measured? That can show a difference across MRIs that isn't made up of lesions or typical disease activity.