Just wanted to say a huge thankyou to everyone who has been posting stuff and sharing their experiences on this forum over the last couple of days…
My husband has not long had his first appointment with his consultant at Walton Neuro Centre and was given a ‘preliminary diagnosis’ of Primary Progressive MS (his Consultant says that he believes he has had it for at least 7 years) . Just got an appointment for him to go back for an MRI next month, the Neuro says that he is 90% sure that this is PPMS and that he just wants to rule out a tumour in his upper spine although he says he doesnt think that is what is wrong due to some of the symptoms that my husband has. Hopefully we will soon start to get some answers.
My Hubby and I really feel like we have been through the wringer this week, the diagnosis (although preliminary) was not what we were expecting and we’ve both been feeling pretty miserable. Trying to get our heads round the condition, facing the fact that we just have no idea what is going to happen or when. The stress of trying to tell close family and friends what is going on and trying to understand just what this all means.
The posts on here have really helped us both feel more possitive. We know we’re not alone, that although people with PPMS go through one heck of a lot the vast majority of you all are cheerful, positive and get through it all with a smile on your dial.
So glad we have been of help. It’s one hell of shock getting a dx of PPMS… esp when you weren’t expecting it… well that’s if you get it which sounds like you will.
It’s a bit of a rollercoaster at first… give yourselves time to get used to it. As you can see from us on here… it really is not the end of the world. It’s a big change to your lives, but it does become ‘normal’ after a while.
Remember also that your MS is pretty unique to you. None of us has exactly the same experience of it. What we all share is the experience of living with this thing that came along without our invitation! It is unpredictable… but you will get used to it. You will get to be your own PPMS specialist and know what helps, what make it worse, what drugs work for you, etc etc etc.
Come on here and ask advice about ANYTHING. We are the experts!!!
One little mantra we all use… ‘One day at a time’.
I hope that it doesn’t prove to be MS but if it does it is not the end of the world. There are meds out there to treat symptoms and two new drugs are about to be trialled for progressive MS. The future seems a bit brighter now for PPMSers. We are all happy to lend support and listen. So if you feel the need to rant and rave or just vent, please do! As Pat rightly says ‘one day at a time’. Teresa xx
Hi, i see you`ve had a long journey to reach a diagnosis.
I spent 14 years, in and out of yes, it probably is PPMS........to a 95% diagnosis of PPMS. Then some years later to be told it was something else, then that dx was quoshed and we were back to probable PPMS.
Recently i have finally been told it is defintiely NOT MS at all.
I have some spinal cord damage, which has taken my mobility and I have bladder and bowel problems.
We often ride a rocky road to diagnosis, but I hope yours isnt too bad, as awful as it is.