Oh that does sound scary. But I have heard of it. It’s what might be done if you have a terrible reaction to a drug. It’s a way of cleaning your blood. Not nice, but hopefully it will do the job and she’ll be in better shape very soon.
I think we are all collectively wishing her and your whole family well while you’re living through this awful time.
Sue x
Nhs is in a shocking state more than many people know, my wife works in our local trust and the stories she tells me about staff Are disgusting idle staff who skive and Sherk their duties sneak away hours early thieve equipment it makes my blood boil because that is just scratching the surface and I know deep down its just going to get worse and worse
I spoke to my brother in law earlier and he was talking about selling their house to try and pay for stem cell treatment in Mexico !
If I’m honest, I think (hope), although my sister is very poorly at the moment this is a bit of a knee jerk reaction, purely because they cant see any light at the end of the tunnel, but as we all know it’s early days in terms of recovery.
I think because this relapse has hit so many different parts of her bodily functions they cant vision any sort recovery yet.
She did try to eat a yoghurt last night though, and raised a little smile when my brother in law slipped in front of everyone on the ward, I always said he was a clumsy git !
One day at a time, little by little eh !
I cant thank you all enough for the advice, knowledge, and particularly your very kind thoughts.
Still keeping fingers crossed for your poor sister. It’s a horrible scary time. And I’m sure she’s bearing up as well as possible. And hopefully you brother in law is looking after himself and keeping his spirits up. It’s almost worse to be the partner of someone hit with a relapse from hell.
Hopefully the plasma exchange should work wonders. And a decent DMD - maybe Lemtrada even, once she’s over this attack will make this one the worst and the last.
Look after yourself too Jac, don’t worry yourself silly, about her or your own prognosis.
Sue x
Thanks Sue.
I am a bloody worrier by nature
Aw, try not to. I didn’t say, but while it’s flipping hard being the partner of someone going through this kind of relapse, it is probably even worse being the sister who also has bast*rd MS. And however much you want to concentrate on how crappy it is for her right now, you can’t help but worry about you too.
We do get it.
Sue x
Good that she can smile at the little things. xxx
She’s starting the Plasma treatment Wednesday, also then going onto one of the DMD;s
She’s really very confused though, keeps asking to our mother, who passed away 3 years ago.
Her emotions are all over the place.
From what I can gather this relapse has left lesions on the brain and this can cause deep depression, according to neuro ?
These lesions must be new because from what I can recall she was like me, lesions were only on the spinal cord.
I’m currently waiting for an MRI after my relapse to see if any more lesions have appeared.
Hope things will start to improve for your sister. Regardless of any lesions I think anyone would be depressed if they were going through what she is!
Just a quick update on my sister. She’s still in hospital, going through the plasma treatment. I visited last night and was shocked how withdrawn she is, apparently the plasma treatment can really wipe you out ? She can hardly keep her eyes open, and when she does she just looks totally spaced out. Still cant swallow solid food so she’s now being tube fed through the nose. No movement in left leg since January (1st relapse), right hand still clawed and being pulled up-towards her should, left hand clawed but still straight down by her side. They’ve had to cut her nails because she was digging into her palms so badly. Still incontinent . Very little communication, almost non existent. About 2 years my nephew was involved in a car crash that left him brain damaged, looking at my sister after this relapse and I’m struggling to see a difference between both ! I’m hoping that a lot of my sister issues at the moment is down to the medications that she’s currently being given, and that apparently the plasma treatment can just wipe you out ? My wife couldn’t sit there and look at her like this, she had to leave, as my sister is usually a sarky git loves a laugh and joke, usually at some others expense though ! Also I think my wife is wondering could this be something to come in the future for me ?
Thanks for the update Jac. I really hope your poor sister comes through the treatment and recovers her sarky self.
It sounds like it’s a nightmare for your whole family.
And I can imagine how your wife feels not knowing if it might happen to you.
Let’s hope not.
My thoughts are with you.
Sue
I really hope and pray your sister starts to improve,such an awful time for everyone in your family just now. J x
Thank you both so much.
What really hit me hard was that laying there she looked like how my mother was just before she passed away 3 years ago from Pancreatic cancer, usually she looks nothing like my mother, but her facial expression just brought back so many hard memories.
I’m hoping this Plasma treatment will at the very least bring back her sense of humour !
Jactac, I truly hope things get better for you and your family. I can appreciate how this is so upsetting for you all and the sad memories it is bringing back. When I was visiting my dad, on one of his many stays in hospital, the one time he was on a ward that mainly had diabetic patients who had unfortunately needed amputations, I hated visiting my dad on that ward, it was truly a depressing experience. I don’t wish to offend anyone here, but sometimes it is not just visiting the person that is upsetting it is what else you see whilst you are there. It is really hard to stop the negative fear and your mind from taking over, but, I really hope that things will pan out in a more positive way for you.
Completely true Chatterbox.
You just cannot stop you mind from running away with itself.
One of the hardest things as well for me at the moment is that my sister and father, who is also not well, had a falling out when my mother passed away, so it’s been 3 years of being stuck in the middle of my sister and elderly father, both very unwell, all the time trying to hold the family together.
Theres only bloody 3 of us left, it shouldn’t be this difficult surely !
They are both the most stubborn pair you could ever come across.
I’ve been looking after my father on a daily basis, with the fantastic help from my wife, and also seeing how my sister is coping, but it sometimes feel that nobody wonders how I’m feeling, either physically and mentally, yet the whole family, even relatives and family friends all know that my mother and I were inseparable.
I know 3 years (next month) have passed but to me it feels like yesterday.
Families eh !
Just a quick update on my sister.
She hasn’t really responded to the Plasma treatment, in fact she’s almost the same now as the day she was admitted.
She’s back on the gastric tube as she’s not eating at all.
The neuro has suggested Tysabri but has warned of side effects, one in particular is a major concern when taking Tysabri, (PML) Progressive multifocal leukoencephalopathy .
Apparently there is a virus that can lay dormant in the brain, (not related to MS) that is kept in check by our immune system, but the Tysabri DMD in particular can awaken this virus (JC virus).
So understandably my brother in law is in turmoil as he has to now make the decision whether to allow the treatment, as my sister cannot really communicate very well because this relapse has apparently affected the part of the brain that controls communication and thought process.
Obviously the neuro has had to explained everything to my brother in law, and given the statistics of there being a problem, but it’s still a very difficult decision to make.
She’s also going to be moved to a specialist rehabilitation hospital, but that wont be until a bed becomes available.
Hi
PML isn’t quite as scary as it sounds. Basically you can only get it if you test positive for the antibodies to a particular virus: the JC (John Cunningham) Virus. Often abbreviated as JCV+. And even then, no one has developed PML until they’ve been on Tysabri for 2 years+.
So while it’s a worry, it’s not quite such a threat as it seems.
The thing is though, it’s basically a DMD to prevent relapses. While some people do find they have a big improvement in symptoms, that isn’t the primary expectation. So while I don’t want to be a doom-monger, your sister surely needs something more immediate than a promise to reduce future relapses.
I do hope her move to the rehab hospital happens soon. I spent some time in a rehab unit both 6 years ago following a dreadful relapse and again last year following my colostomy operation. A good rehab place is exactly where you want to be if recovering from a relapse. The smaller unit with a higher staff to patient ratio than the main hospital is an excellent facility and I’m sure where your sister is going will be just as good.
Still wishing her well.
Sue
hiya jactac
sue writes sense-as usual!
i have been on tysabri 5 years-i know someone who has been on it well over 10 years.
its well monitored and regular mri’s when taking tysabri.
i wish both her and yourself well.
ellie
Thank you both. My brother in-law just rang me, she has tested positive for the JC antibodies. From what I can gather though the neurologist still thinks the Tysabri is still the best option to go for. At the moment it feels like everything is stacked against her.
hiya
i agree with neuro. from your description of ur sis and from my own experience i would take tysabri-well i do! but its still hard for those that care to make the decision.
as i understand it those that have lost their lives whilst on tysabri had other complications as well as ms (according to neuro)
still a huge decision for those involved. i was well enough 5 years ago to make my wishes known.
take care.