There has been mild progression is size and number of the deep white matter lesions since last scan. What does this mean? There are no enhancing lesions. Does this mean I should start taking Copaxone again? I really, really hate those shots! But my last flare up in 2012 was kind of scary I couldn't speak properly or even write. Thank you.
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I'd talk to your neurologist for their recommendations regarding medication and treatment. Its very scary, there are no right answers and everyone has their own way.
At this stage in my life I can't imagine not being on something in an effort to keep this monster at bay. Best wishes with whatever you decide.He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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Thank you
Originally posted by Jules A View PostI'd talk to your neurologist for their recommendations regarding medication and treatment. Its very scary, there are no right answers and everyone has their own way.
At this stage in my life I can't imagine not being on something in an effort to keep this monster at bay. Best wishes with whatever you decide.
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Originally posted by samanthaelizabeth View PostThank you!!!
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Originally posted by ru4cats View PostI don’t know how long you have been off meds, but I would seriously ask your neurologist about more choices in drugs. Copaxone is in the 4th (lowest) tier of MS drugs with the highest efficacy. The infusions are in tier one. Oral drugs are in tier two. Just some thoughts to ponder...
https://www.mayoclinic.org/diseases-...s/art-20095758He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
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No enhancing lessons meant that when the contrast was injected, the subsequent pictures didn't show any active lesions. So the MRI doesn't show evidence of a flare. But MRIs don't always pick everything up. Part could be the strength of the machine used, part because even the stronger machines can't pick up smaller lesions, and finally, some lesions have been shown to disappear in time.
So when you discuss with your neuro, make sure he focuses on your new symptoms or worsening of old symptoms. Any that last more than 24-48 symptoms meet the criteria for a relapse.
As for the Rx discussion, it is personal risk/benefit assessment, along with your insurance/financial considerations. There are stronger meds than Copaxone now. It is worth reviewing so you can make an informed decision for your personal situation. As you see it the number of sub-forums in the medication forum, many options.
Hope you feel better.Kathy
DX 01/06, currently on Tysabri
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AM I still RRMS??
Originally posted by samanthaelizabeth View PostThere has been mild progression is size and number of the deep white matter lesions since last scan. What does this mean? There are no enhancing lesions. Does this mean I should start taking Copaxone again? I really, really hate those shots! But my last flare up in 2012 was kind of scary I couldn't speak properly or even write. Thank you.
Am I still RRMS or does this mean SPMS
??
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Only your neurologist can answer this. It is not a diagnosis that can be made by MRI alone. Your symptoms and neurological exams, along with relapse history would need to be evaluated. If I recall, your neuro wants you back on Copaxone, which would appear that your neuro still thinks RRMS.Kathy
DX 01/06, currently on Tysabri
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It says there has been mild progression in size and number of lesions. That is something to be bvery concerned with. Progression is not reversible.
When is says there are no enhancing lesions is means that when they put the contrast in your veins, none of them are active and inflamed. Which means they wouldn’t benefit from steroids.
You don’t have to go back to copaxone again. You do not have to use any DMT. It’s your choice. But MS is a very serious disease. Once the damage is done it cannot be reversed.
I don’t like shots either. But there are many alternatives. There are the pills that I’m too impressed with and there are treatments than can be given by IV infusion. Tysabri is still the most effective but scary for many. Ocrevus is the most exciting thing right now. If I were you I would talk to your doctor about it.
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Sorry to hear about the progression but as far as DMTs go, there are so many more options than Copaxone more than what was available to you in 2012 when you started on that. Definitely talk to your doc about it and as others have said, its a personal risk/benefit analysis but with the meds out there today (specifically, the 3 oral options) it may be a better option than injections.
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Does this mean I am PPMS NOW?
Originally posted by palmtree View PostIt says there has been mild progression in size and number of lesions. That is something to be bvery concerned with. Progression is not reversible.
When is says there are no enhancing lesions is means that when they put the contrast in your veins, none of them are active and inflamed. Which means they wouldn’t benefit from steroids.
You don’t have to go back to copaxone again. You do not have to use any DMT. It’s your choice. But MS is a very serious disease. Once the damage is done it cannot be reversed.
I don’t like shots either. But there are many alternatives. There are the pills that I’m too impressed with and there are treatments than can be given by IV infusion. Tysabri is still the most effective but scary for many. Ocrevus is the most exciting thing right now. If I were you I would talk to your doctor about it.
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mscare has a publication that is a consensus of MS DMTs. It looks thorough and is searchable.
I have waded through the ICER document: Disease Modifying Therapies for Relapsing-Remitting Multiple Sclerosis:
Effectiveness and Value
Though it is skewed towards cost savings, it uses some sort of statistical analysis to compare DMTs that have not actually been compared in a clinical trial. At the end of many pages, it has a table that lays out efficacy and risk. Whereas as Copaxone is at the low end of risk, it is also at the low end of efficacy. There are now more options for higher efficacy but with lower risk.
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she offered other treatmments but I didn't think to ask why?
Originally posted by pennstater View PostOnly your neurologist can answer this. It is not a diagnosis that can be made by MRI alone. Your symptoms and neurological exams, along with relapse history would need to be evaluated. If I recall, your neuro wants you back on Copaxone, which would appear that your neuro still thinks RRMS.
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An MRI report that references "progression" does not meant that you are SPMS or PPMS. You can be RRMS an have progression. The distinction can only be made by your neuro and involves more than an MRI.
Copaxone wouldn't be offered to you if SPMS or PPMS. Your neuro probably mentioned other meds approved along with Copaxone to treat RRMS.
Hope you speak soon to your neuro. Let us know.Kathy
DX 01/06, currently on Tysabri
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