Hi there folks,
I’ve today received my diagnosis and it’s PPMS. Well I’m feeling ok at the moment as at least I know what I have now! I’m not lazy or imagining my jelly legs anymore.
Our MS clinic is full and unable to take new cases. I’ve been referred to the next boroughs hospital who have a 75 week waiting list… My Consultant was relatively positive explaining new treatment can rapidly reduce symptoms and slow down the progression of PPMS however 75 weeks before I can meet someone and start treatment seems crazy.
Has anyone found themselves in a similar position or has anyone any suggestions to move things along quicker please? I’m 42 andy Daughter is only 4 and I would like to be as active as possible for her!
Thanks in advance.
Hi there folks,
The best thing to say is well done for getting a diagnosis, as at least you have some certainty However, PPMS is no party
Whereabouts are you? Outside the UK?
A choice of no new cases v a 75-week wait is staggering. In the UK there is only one approved treatment for PPMS, namely ocrelizumab. The earlier you start, the better chance you have of it affecting disease development and it sounds like yours has been identified quite early on. There must be other hospitals that your Doctor could approach?
I got seen by a Consultant Neurologist 10 weeks after a referral by my GP Doctor, then another 8 weeks to see an MS Specialist. However, 14 months later, I am still fighting to get put on any sort of medication. You have to work the system every step of the way.
I am speechless, well not quite takes a lot to keep me quiet (man quite and quiet just had me scratching my head )…
75 weeks lead time, they can’t be serious… honestly I hope that isn’t in the Uk…
If you are in the Uk, please go back to GP and say this is unacceptable… to be honest if you not in Uk the same…
Apologies, not meaning to offend anyone…. But could the wait time be because the type of MS you have is more difficult to treat…
Before anyone does come back I do know that there in general for MS long mead times, I too MS affected by that …
Hi, waaaay back in 1998, I saw my GP as I was having mobility issues. She sad I needed to see a neuro…there was a 10 month wait on the NHS.
So I paid for a private consultation…PPMS was suspected, but wasnt fully diagnosed for 22 YEARS!!!
Have you thought about going private just for the next appointment?
Crikey so sounds like you’re in a similar position! I’ve been recommended to speak to PALS and the Complaints Team to try and get things moving so I’ll let you know if I have any luck with them!
Oh and I am in the UK would you believe!
Thank you so much for the message and in sight. Would you believe I’m in the UK?! I did say to the Neurologist Consultant on our phone call I want to start treatment asap and she was all for it however with out local MS clinic unable to take on new cases she seemed shocked I haven’t heard back following her referral. It was only when I spoke to the the hospital I’ve been referred to that I found out about the waiting lists!
I’m just thinking the longer I wait the less likely the drugs will have of working?!
I think the PALS route, and then, or at the same time, a word of complaint to your MP.
It doesn’t surprise me that the waiting lists are so long. The NHS is failing people badly in just about every discipline. 75 weeks is too long to wait for treatment, for something that is progressive and has very limited options anyway. So keep pushing.