Hi folks. My wife has recently been diagnosed with relapsing remitting MS.The neurologist has told us it is currently very active. I was just looking for any advice or help from anyone with some experience of what might lie ahead for us. Thanks in advance.
Hi, did the neuro talk about DMDs? ie disease modifying drugs?
In active RRMS, I would have thought something would be appropriate, if she fits the criteria.
Boudsx
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Advice in general: Understand that her strength and stamina aren’t going to be what they were. Don’t baby or pity her, but understand that she’ll need to rest or sleep more often, and as time goes on she’ll have more problems with all physical activities (which includes cooking, cleaning, bathing herself). She may have random bouts of pain, blurred vision, or trouble speaking and/or eating. She may need help walking, whether that’s using the wall, your arm, or a cane. Recognize that all of these issues may appear with no warning and go away just as quickly or after a period of rest.
If she’s having a relapse, the good news is that it’ll get better. The bad news is that she’ll permanently be a little worse than before. RRMS doesn’t have a steady decline with a straight line slanting downward. It’s more of a zigzag, and how often she has a relapse will be unique to her own situation. The length of the relapse is also different for each person, and she won’t fully recover from it.
For the medical side, they may start her on one of the DMT’s and/or schedule regular MRI’s. If you’re in the UK, I suggest getting in touch with your local MS nurse. They seem to provide a lot of good help.
This is a scary time, but by acknowledging the increasing need for more periods of rest and occasional assistance, she’ll still be able to do nearly everything she’s always done. She may never reach the point of needing a wheelchair, and if she does, it could be many years down the road. I’ve been dealing with it for 40 years, and it’s only been within the last 18 months that I’ve had to quit working and make serious changes to my activities.
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Thank you. That is all very helpful. My wife has started having infusions of a drug called Tysabri. We have been told this is a very good drug and may help with controlling her relapses.
Yes, she is now getting infusions of a drug called Tysabri.
Hi all
sorry if I’m meant to start a new post. I am just trying to reach out. My brother (late thirties) has been diagnosed with ms recently he has been offered fusion treatment. He cannot read for himself anyway and he doesn’t have anyone close to help him. He was given a booklet and just a few days to decide on this new infusion treatment and has not felt in the right mind to decide. I don’t believe the hospital has given him anyone to support him and we aren’t sure how to contact this support either. With COVID around it’s especially difficult for anyone to be there to support him but regardless we are family not specialists so why haven’t they put him in touch with this specialist help ? Especially as he cannot read .
please can anyone offer any information or advice? Thank you
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Hi Charlene, my wife has been receiving fusion treatment for 6 months now and it seems to be helping her. But the decision would be purely your brothers as to whether or not he takes it. Has anyone explained to the neurologist that your brother can’t read and will need the options explained in full to him? X
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Hi They have been trying to ring in and explain but it’s really hard with COVID going on. I do hope that they can help him understand his options better soon but also allow him a little more time. Thank you for replying. Sorry I say they it’s my mum (his step mum) and his brothers that are trying, I’m at work all day. I have spoken to my brother for a few hours at the weekend but feel useless to him. I will try to get an update today thanks again and I wish you and your wife all the very best x
Hi Charlene,
My daughter (mid 20’s) was diagnosed last year with relapsing remitting MS. I found speaking to the MS Soc about the various treatments really helpful and would recommend this, (if you/your brother haven’t already called them).
I remember feeling the same way and you just want the medical expert to point you in the right direction. The reality is that nobody will tell you which treatment to choose, it is an individual choice of the person with MS.
We had lots of family chats going through printouts of the treatments and found that this just helped in general too.
It took a good few months but my daughter finally decided her treatment and then COVID 19 put a hold on everything.
I’m sure the MS soc will advise on how to get hold of the support needed and hope this helps x
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Hi all thank you. The good news is I think he feels a lot better now he’s been chatting to all the family and he has decided to have the treatment. How true it is that it makes you feel better just to chat and that’s in both our cases on this occasion thank you x