There is a way of fine tuning the PML risk even when JCV+. They can now identify with a bit more certainty who is most at risk. And Tysabri is probably worth taking even just for 2 years (during which time JCV status isn’t a risk for PML). He needs to take on board the neurologists advice I should think.
It must be so very difficult for him, making the choice for yourself is hard, but I can imagine how much more frightening it is making the decision on behalf of someone you love. Which ever way he goes with this decision, he needs to feel that it’s the right decision for her. And he will probably spend years wondering if he made the right choice irrespective of which way he goes. The poor man. I hope he knows he has so many of us thinking of him, your sister and all the family. Terrible times for you all.
Is what has happened to your sister typical of m.s. or is there something else going on? A difficult situation for everyone - all good wishes to you all!
Jactac, I can’t add anything to what has been said above as I’m very early in my ms. But, I just wanted to say hang on there. I know what families are like, my mum hasn’t spoken to her sister for 12 years after my gran died. I just find the whole situation really sad. As others say you need to take care of yourself as well in this extremely stressful situation. I hope your sister gets a bed in the rehabilitation hospital soon and her condition improves.
She’s had numerous scans and tests to rule out other possibilities, but everything points to a very very active relapse within in the brain.
I know the decision to give this treatment has been made by my brother in law, which he discussed this with the family, and he has our support, so I believe the treatment of Tysabri may be starting today.
I think my brother in law feels a little awkward talking about the side effects around me because in reality it could very easily be me laying there one day, but I’ve tried my very best to be positive around in front of him, just so that he feels 100% sure he’s making the right decision, which I believe he is.
So, rehabilitation centre wont take my sister whilst she’s still on feeding tube, and neuro went to start Tysabri last Friday but because she kept forgetting or understanding the discussion regarding side effects, (she’s still very confused) he refused to start the treatment, so he wanted to wait ANOTHER week and reassess her responses.
If she’s still unable to fully communicate he said “they will go down the route of what is in the best interest for her” !
i have no answers. other than it may not be talked about enough but get poa in place for this situation. thats no help to u jt but its something worth doing before similar arises for others.
Dreadful situation. Every time you post an update, I have to tell my OH what the latest is. I can’t believe what an awful, awful time she’s having. And her poor husband must be beside himself. And as for you …
I am just so sorry for you all. And willing her to improve.
Unless she can take on food orally the Rehab centre wont take her, but she’s still having problems swallowing, so the bed that became available has now gone, and unless she can communicate enough with the neuro to fully understand what she’ll be taking on when she starts the Tysabri he (neuro) is not very committed to start it unless she can understand the side effects.
I think though from talking to my brother in law, the neuro is going to make the decision himself based on whats best for her.
So the latest news with my sister is that she’s very slowly starting to eat “normal” food, however, the hospital is still reluctant to remove the feeding tube as she’s not constantly eating solids, and even when she is it has to be fed to her slowly.
The rehabilitation hospital wont take her until she’s fully off the feeding tube, so thats a bit of a disappointment to say the least.
As for the Tysabri, well that is apparently starting this Thursday, why they need to wait for a specific day is beyond me !
They (neuros), have decided that the treatment is starting on the basis of “what’s in her best interest”.
She’s still very confused, and the neuro thinks the relapse is still very active.
Theres some improvement in being able to move her hands, but nothing with her legs.
She can, sometimes do things on command, like slowly touch her nose, but thats really about it.
i am going to tell u this in the hope that you glean some positives in amongst it somewhere!
when i had my life changing relapse in 2012 i slept for 21hrs a day, had to be washed-didnt bother with clothes, huge probs trying to speak. i didnt give up but more importantly my family didnt! i can only describe what they done as diy physio! moving my limbs in the hope that some messages managed to get thru. they went thru my phonebook and we tried to have a ‘convo’ about someone different each day. this went on for several weeks.
now today 6 years later-i have regular carers-my right side that was ‘dead’ is still weak, no fine motor skills but i can type with one finger on my left side! i can weight bear for short periods. memory, bowel/bladder issues ongoing as is speech and thought processing difficulties but the body and brain are amazing things!
what i am saying-never give up-trust ur instincts!
mmm short fuse? i would be tempted to let it be lit. not ideal i know but u are family! my brother is n.o.k as i know that he will 'do 'what he thinks i want not what he wants. families?!
I’m glad there are some small improvements for your sister. Just little things. Sometimes a nightmare relapse can take so long to improve it seems endless. But at least she is improving.
You do need to have a certain amount of mental strength to get through this kind of relapse, but the body does a lot of it just on it’s own. And having a partner to help is a huge help. Without my husband I don’t know how I’d have coped with my big relapse (like Ellie in 2012!).
I still believe that although we think of RRMS as ‘less bad’ than progressive of either variety, and generally it is (and I don’t forget that we do have DMDs for RR), but the potential for a real humdinger of a relapse that is badly disabling can be about as bad as MS can get.
Like Ellie, I still live with the effects of my relapse. It did remit, but I’ve not been able to walk since then. I feel lucky that my cognitive problems have been caused more by the ‘slow creep’ of SP rather than the ‘big bang’ of a relapse.
I do hope the improvements continue. At least if she’s starting to be able to swallow, hopefully it won’t be long before they can remove the PEG feeding tube and they move her to the rehab unit.
The problem I have is that my sister can be be very very indecisive, she does think that without her husband then she would be lost, which ok to an extent is correct, but I feel that she should at least be making some decisions.
The MS has basically not only taken away her physical abilities, it has also wiped out her self esteem, I guess she’s got this “whats the point” attitude, where as before the MS she was an out going lively, cant stop me sort of person !
Strange that your post comes up again today. I keep worrying about your sister. How’s she doing? Any better? I do hope so. I was talking about her with my husband and it’s made us start talking about getting a Lasting Power of Attorney so that if anything dreadful happened to me he’d be more comfortable making decisions about my health.
She remains in my thoughts. But for the grace of something all powerful … her situation could be that of any one of us.
She has finally been moved to the reabiliation center. She’s eating by herself allbeit slowly, there’s slight movement in her left leg and foot. Also started the Tysabri. Thank you for asking.
Thats so,so good to hear we have been holding our breath,waiting to hear some good news about your sister.I hope she continues to improve now,it must be such a relief for you all,so pleased you have been able to share the good news with us all.Please keep us up to date with her progress,sending you lots of love and best wishes.x