My dad is 63 and has ppms. He has never taken medication in his life. He’s been in a wheelchair for 10 years now. He is currently in hospital due to not taking care of himself, not eating properly, very aneimic, bed sores etc. He seemed alot better after blood transfusion and better eating. However now he can hardly even move or talk after they prescribed him baclofen for the spacticity in his legs. He is so confused so can’t give any feed back to the doctors. In anyone’s experience do you know if botox injections would be more suited? Will the docotrs prescribe it easily? Or will he get better on the baclofen. He’s been bed bound for 2 weeks in there now and were so worried he won’t ever get his mobility back. He’s been on the baclofen for about a week and they upped his does couple days ago? Any advice would be much appreciated Thank you
This is where you’d probably need to discuss with his Neuro or Neuro rehabilitation doctor.
I’m still mobile (just about) and had the botox jabs in late December and was told I needed to stretch a lot so I’m truly not sure how that’d work out. I still carried on with baclofen and couldn’t get a follow up appointment til about April/May, so the botox has worn off and with cancellations etc. means I’m currently due a follow up in August!
Your hospital could be much better etc. just warning that you may need to push for a quick follow up etc.
Maybe you could speak to his MS nurse initially and get some more info. I’m just not sure of benefits if the muscles aren’t stretched or too active… A physio even mentioned my quads, as so stiff but the consultant that did it confirmed it would be impossible for me to stand if he did that - I was quite relieved that my exercise qualification didn’t fail me on that as I think that’s why I was so scared.
Sorry I’m not too helpful, the bits I remember from mine was black biro crosses to mark out where the jabs would go (he had a colleague he was talking through it all). I had 3 boxes of the stuff, maximum safe level allowed is 5 boxes apparently. I had 9 injections. So my good leg still got 2 in the calf and 3 in the other, then 2 at top of adductor (inside top of thigh!) and 2 on hip (which required a bigger needle!!).
BUT I can confirm it was a pain free experience at least Hope you can get some more advice from a professional but baclofen seems to be pretty standard for us lot with a couple of alternative options (I tried 2 others but had to go back to baclofen in the end.
Sonia x
Thank you for your response, he’s never had a Neuro or ms nurse, nothing! He’s been in complete denial since the disease started 30 years ago. We pleaded with him over the years to get help (He lives alone) it’s come to this to get him help! I don’t think they see him as that important due to having ms rather than cancer etc. There are no specialists there in ms. a Neuro put him on baclofen and never came back to monitor him! Me and my sister’s have had to do our own research and asked for him to be taken off it. They agreed straight away. The poor man has lost use of his legs, but now his arms, even his throat to swallow! Hopefully when it’s worn off he will get some strength back. He’s on a waiting list for rehabilition ward. For now I feel he’s been forgotten about. When we asked the nurse what was wrong with him as he’s not normally like this, she shrugged and said he’s got ms. Really hoping they will give him Botox as his legs are all scrunched up to his waste. They mentioned trying other meds first but it will affect his whole body again surely! Is botox expensive on the nhs I wonder? I just wish we had the money for private healthcare
Hi
I am so sorry to hear this, but now he is in hospital, this would be a good time to get him in contact with a neuro and also ask to be put in touch with a MS nurse, as they will then always be your first point of contact.
Like your Dad being diagnosed many years ago, there were no MS nurses and neuros had no medications to offer, so it was easy to be just left to get on with things, but thankfully times have changed, and although you may have to really push, please do it, get him under a neuro and nurse.
With regard to baclofen, I can only tell you my experience, which was I started on a very low dose and only increased very slowly, and initially it did appear to make the problem slightly worse, but eventually helped.
Hope this helps and wishing you and your Dad all the best.
Pam x
Hi molly looks like they have iether prescribed him far to high a dose or he just can’t get on with it you will need to talk to someone quickly I have ppms to and yes feels like you are pretty much left to get on with it .
No, I don’t think it’s cheap for them and obviously the quantity is quite high. I was scared it’d be painful as spasticity mean the muscles are switched ‘on’ too much of the time but can confirm the injections were painless.
Yes, I have a drug wish-list just to try getting a bit more normality. Ocrevous (might slow progression), sativex (might relieve some of spasticity) and fampyra (to maybe help my neurons ignore the MS so make my legs move a bit more
I wish you luck x
Hi Molly, what a sad time for you, seeing your Dad like this. The other posts are right to suggest asking to see a Multiple Sclerosis Specialist Nurse, and arrange for your Dad to have a Neurologist Consultant - this is very important for your Dads own welfare. His PPMS will be monitored for any more M.S activity since his last MRI Scan.
Whilst he is still in hospital, ask the Ward Manager to notify Social Services, who will visit him at the hospital or at home. They will arrange an Assessment of his mobility & care needs. If possible, try to be there for the assessment just to make sure anything that could be dangerous for him, steps, falls, stumbles, bathing or showering, taking meds etc are all mentioned to the Soc.Serv.team. They will record or make notes of everything said during the assessment.
If appropriate, a Care Package is put in place, to help your Dad to live as well as possible with the support he needs, either in his own home, sheltered accommodation or a Nursing Home. It’s worth making sure they are aware of the reason for his admission & his self neglect. Which is probably as a result of his PPMS and cognition damage.
I have PPMS too, out of the 4 types, this is the rarest and I’m sorry there are no cures for M.S. It’s incurable but a lot of research is being carried out.
I only know that existing damage, like spasticity, won’t recover, but your dad’s MS Consultant will help him to treat the symptoms and have a better quality of life. Medication and equipment are available too.
I wish you and your sisters all the best in finding the information & support you need.
Chrissie x