in shock and feel lost

Hiya all

to cut a long story short last year i was given the diagnosis of rrms,which was on my notes at the doctors for the past 3 years,that floored me as i thought for the past 3 years i had ME,

two days ago i saw the neuro as my doctor had referred me as for the past 9 months i have been getting worse ie bladder being one of them,anyway the neuro( he was very nice and did not rush the appointment)

very gently told me that i have ppms,and that the problems with my bladder etc were due to this,he said that i would be seeing him every 6 months,and that i am to see another doc regarding my bladder to determine what meds i need,he also said that i will be hearing from a ms nurse,

Once again im floored,feel lost, i cant get my head around it,i was just getting used to dealing with rrms,

any advice please x

Hi Sue

Sorry I can't give any advice as I'm new to MS myself, but just wanted to get a quick post of support and best wishes up in response.

You've obviously come to terms with RRMS and I'm sure you can do the same with this latest flooring news.

Stay positive!

Mr S

Hi Sue and (((hugs)))

After everything you've been through I'm not surprised that you're feeling floored I think I would be too crying1

I know it's early days since being told it's ppms rather than rrms and you probably have all sorts of things going through your mind right now so having a look at the ppms forum may be of more help to you - other ppms'ers will be able to offer you better advice and tips. There's also a publication on Primary Progressive available from this site which may help a little too.

I know that a lot of ppms'ers take LDN - and some find it beneficial for fatigue and bladder issues. When you're ready and if you decide too I've added the web address for you to have a look at:

Having already had to go through the ordeal of one diagnosis you know you can get through this one, give yourself a bit of time to digest the news before launching into anything - make sure you're readyThere's no rush. 

You should be hearing from your nurse soon, if you don't then get onto her. Same goes for the date for an appt to see a specialist regarding the bladder issues that you have.

In the meantime look after you Sue and remember that we're always here if you need to offload or just want to chat.

Am sending you yet more ((((((hugs)))))))

Debbie xx

You must feel like you're on a rollercoaster letdown

I'm afraid I don't have any words of wisdom, but as Mr S said, you managed to get your head around RRMS, so give yourself some time and I'm sure you'll do the same with PPMS.

It completely sucks that you've been so mucked about, but at least you now have what sounds like a good neuro and a budding support team and, while there may not be DMDs available for PPMSers, there are still plenty of things you can do to stay as fit and healthy as possible.


Karen x


Hi Sue

You have been given the run around by these medical folk, haven’t you?
I am sorry that your dx has changed to PPMS but it sounds like you are getting good support from the Neuro. My MS specialist dx me and then promptly told me that there was nothing more he could do for me and discharged me.

If I feel the need I have to be referred via my GP to see him again, otherwise I have been cast aside like an old sock. At least, that’s how it feels!

Anyway, give it time, you will come to terms with your dx and find a way to cope. Stay in touch on here, there is always someone ready to help!

Thinking of you,

Teresa xx

Hya everyone,

thank you all so much for your kindness and support,it has helped me,im still struggling with it but its early days still,

I keep giving myself a good talking too lol,telling myself that there are people out there who are worse off than iam,and that i need to focus on what i can do rather than what i cannot,and its working,

hugs to everyone  

sue x