Rrms possible spms with relapses

[Mumof3]

Hi
sorry in advance if I ramble I have a tendency to do that.
my husband was dx dec 2011 with rrms, progression and big relapses while on rebif, moved to Tecfidera 2014-present. However saw neuro in dec 2017 and she put husband as Edss score of 7, said that tec is no longer working she thinks hubby maybe spms with relapses (awaiting answer for that) his newest mri from jan this year shows new lesions in the medulla of the brain, which has brought on new symptoms especially speech vision and breathing. I’m very scared that once he’s off the tec he will have a huge relapse, I currently think he’s having a relapse however the ms nurse said it’s a sensory relapse but nothing can be done for that, I’m also very worried to where this lesion is sorry for the long post, but the main questions I have is
1) coming off tec what’s the chance of relapse
2) is his neuro correct saying that nothing can be done for him once he’s off the tec
3) the lesion in the medulla should I be concerned

thank you

[KoKo]

Hi
sorry in advance if I ramble I have a tendency to do that.
my husband was dx dec 2011 with rrms, progression and big relapses while on rebif, moved to Tecfidera 2014-present. However saw neuro in dec 2017 and she put husband as Edss score of 7, said that tec is no longer working she thinks hubby maybe spms with relapses (awaiting answer for that) his newest mri from jan this year shows new lesions in the medulla of the brain, which has brought on new symptoms especially speech vision and breathing. I’m very scared that once he’s off the tec he will have a huge relapse, I currently think he’s having a relapse however the ms nurse said it’s a sensory relapse but nothing can be done for that, I’m also very worried to where this lesion is sorry for the long post, but the main questions I have is
1) coming off tec what’s the chance of relapse
2) is his neuro correct saying that nothing can be done for him once he’s off the tec
3) the lesion in the medulla should I be concerned

thank you

Hi Mumof3 and welcome to MSWorld

I'm sorry to learn that your husband is having a very difficult time with relapses and progression. I'm sure that this ordeal is hard on you as well.

You are a very caring and concerned wife to seek answers to questions about his MS.

Because of MS being so unpredictable, there may not be any accurate or definitive answers to your questions.

I do wonder about your question #2 though - "is his neuro correct saying that nothing can be done for him once he’s off the tec"

I would certainly think that there would be other options - something else to try.

Maybe other members here will have some experience or insight about this.

Please don't give up hope yet.

Take Care

[pennstater]

Thank you for looking out for your husband! It is wonderful he has such a supportive spouse.

I am sorry to hear that your husband has had relapses and progression. If his neuro changes the diagnosis to SPMS, there are not a lot of options treatment wise. If she leaves it RRMS, than more options are open.

There are infusions such as Tysabri, Lemtrada, Ocrevus that could be options for RRMS. I believe Ocrevus is also approved for SPMS, but would have to research.

Is your husband's neuro an MS specialist? Even if so, I would want to get a second opinion on his diagnosis and treatment options. I would ask his current neuro to not change to SPMS because of insurance implications until you have had a second opinion. Any good doctor should welcome a second opinion on such a major decision.

Good luck.