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I had an appointment with the MS Clinic neurologist a couple of weeks ago and something that he said has been nagging at me since. So, I'd like to ask your advice...

I was told that I am probably transitioning into SPMS (he called it Relapsing Progressive MS) and that I need to start disease modifying drug therapy ASAP. I have recently had a few minor episodes that have not really resolved 100% but in general, I feel good except for the increased stumbling and balance issues. I have considered the options and decided that the only drug that I might try is Copaxone. However, if I am truly on the brink on SPMS, then I have second thoughts...if I understand correctly, the standard drugs have no positive effect on SPMS.

My questions to the OMS team: 1- has anyone else heard of Relapsing Progressive MS? and 2 - Does it make any sense to start the Copaxone at this stage?

Confused but doing more research...

Claire
Hello Claire,

I have SPMS, and you are right to think that there are no drugs out there that are specifically for this type of MS. All DiseaseModifying Drugs are formulated for RRMS. The best you can do if you are indeed Secondary Progressive is to do the OMS programme - as you already seem to do (?!), and maybe look for medication for specific symptoms that you may have. Take care!

Margarite
Thanks Margarite. I am confused since one neurologist (MS Clinic doctor) said I was "progressive relapsing". I have made an appointment with my other neurologist (my primary neurologist) to get a second opinion.

Because of my age (55) the MS doctor felt that I was at high risk of being already SPMS or soon to be...but he really pushed me to start DMD.

How did you know you had transitioned to progressive phase?

I follow OMS and am reluctant to take toxic drugs that will not help me.

Claire
Hi Claire. A few months ago my MS nurse and I compared 2 MRIs from 2009 and 2013. There were no diferences between the two: no new lesions, no atrophy and no volume loss. I also have not had relapses the past 5 or so years. She concluded that I had transitioned into SPMS.

I have also been without DMDs for the past 4 years, before that I used Copaxone.

I would certainly ask for a second opinion. The efficacy of the medication would have to outweigh the side effects, i believe.

Margarite
Thanks Margarite. Its nice to hear from someone going to through something similar.

This is all new to me. I was diagnosed with MS last year (Jan 2013). At no time was I officially told whether it was RRMS or SPMS....and then this "progressive relapsing" comment.

I wish to things were more clear cut!

CdeG
I am SPMS. I have no idea when I transitioned. I have had ms for 7 years. I did have symptoms come and go at the beginning but I would say for the last 5 years I have slowly got worse. My neurologist diagnosed SPMS 2 years ago but I think it is all guess work. He said to me that none of the drugs have any long term benefits or slow progression.
I was so glad he said this as I didn't want to be in the position of having to decide whether to take drugs or not. I met a lady who had chemo for ms. It did get her walking again but the effect was only temporary.
Physio has helped me the most, helped with my walking.
Nothing has helped my bladder which is my greatest worry !!!

But only you can make the right choice for you.

I hope it all works out !
Hpebbles2, just last week I started low dose naltrexone and the most spectacular change happened after taking it for 2 days: my unruly bladder, which has been bothering me for years, is working properly!!!!

Something to read up on, perhaps? Anything it takes, right?!

Take care, Margarite
Robin,
EBV then glandular was me all over. Then travel vaccination and hey ho MS at 28!
Thanks all! I have some thinking to do... I am leaning more and more to not starting Copaxone.

I have only been following OMS at about 80% compliance since Jan 2013 and 100% this past month. (Meditation and stress management were the last items that I focused on in the fall of 2013, and this has had a tremendous impact. The improvements that I have seen are noticeable.

Claire
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