My questions are about my sister , she is 56 years old and has Secondary progressive M.S. She is a former shadow of herself, can’t walk, can’t hold a cup, pen or feed herself. She has a permanent catheter ( super pubic I think ) and has carers coming 2-3 times a day. She is currently in hospital and her husband has had to take the machine she uses in a morning to help force air into her lungs. I am devastated, I don’t think I have ever seen anything so sad as today seeing this machine literally forcing air into her lungs. I watched her chest and the noise will haunt me forever. There must be something that we can do .
Please please somebody out there must know of something that can be done, I have offered Stem Cells, but I don’t really understand what their role would be and would it make a difference? She can’t bathe, shower just the normal things in life that we all take for granted and I am horrified by what I have seen today. My mum and I have admitted to each other that it feels like she is fading away quicker and quicker and we have to put a stop on it before it’s too late
I know everyone on here are suffering one way or another but I need to speak to someone who deals with this everyday , maybe just maybe there is someone out there who can make a difference.x
Hi Mathew. I’m really sorry but I have no advice to offer in what sounds like a terrible situation your sister , for you, and family. I guess it’s a matter of asking for as much information and help that the medics can offer. Can I ask what they are saying?
I’m no medic and could be completely wrong but I think any stem cells for use in MS have to come from the patient. Again I’m absolutely no medic but it’s possible that stem cell therapy wouldn’t be suitable for your sister ( basically the treatment involves taking some of the patients, then wiping out the patient’s own immune system and injecting some of the stem cells to build a new immune system. For a while and having no immune system the patient is very vulnerable to any infections. For some people the treatment doesn’t really work).
So sorry to hear this. I am not an expert, but there is a new drug which they are trialling, I believe, called PIPE (?) and the idea is to try and replace the myelin to some extent. You might want to ask her neurologist about it. I must stress it is not available as yet but I mention it as it may be a possibility in the future?
You sound so desperate and hurt - wish there were more we could do. I’m not an expert on this as my MS is early stage. Perhaps someone who has experienced more advanced MS will have some ideas. You might find it helpful to post in the carers/relatives section of the forum too, in case someone there has more experience.
My understanding was also that stem cell treatment for MS patients involves the patient’s own stem cells. The evidence is a bit patchy but my impression is it works better on people with earlier stages of MS/ less disability. It’s also not easy to get hold of on the NHS.
Even if there is no MS treatment though, there may still be treatment for the symptoms.
Could you also check whether hospices in your local area provide help to patients who are not terminally ill? Some do have services for people with chronic illness. That might be helpful if she is discharged from hospital - again, a long shot.
This is probably obvious but have you spoken to the MS team directly? You could also try the MS helpline. If just speaking to a non-expert would help, PM me.
Sorry not to have better ideas.
So sorry to read of your sisters plight. MS is such a cruel disease. You, as her brother also suffer from the emotional effects of your sister’s deteriorating condition.
I’m sorry to say the Stem Cell replacement did not work for someone I know. She is now physically housebound with MS but thankfully still able to function independently. I understand the Stem Cell procedure is problematic, expensive and the patient’s MS needs to be in the early years of diagnosis.
Reading the above post, there’s some great pointers to obtaining advice.
Really sorry I can’t help you or your sister. I sincerely hope all of your sister’s relatives find a Respite Centre for her, even if for just a short breaks throughout each year.
Best wishes
Chrissie