Not good news :S

Hi everyone,

So me , my mum and stepdad saw the MS doctor today, since Mick my stepdad was dignoised over a month ago we hadnt heard much, anyway today was the big appointment with the MS doctor, He has explained to us it looks like Mick has primary progressive MS and he is reffering him now to a london hospital, not sure which one yet but he is going to another specialist now in London, He is putting Mick forward for another MRI scan and a bladder scan, His had about 5 bloodtests today, so its been a very emotional day for him , very scary taking it all in.

Anyway his back home now, Im back at work… Just very hard hearing that this could be the worse MS, Mick my stepdad is 47 and over the last year things keep getting worse, today he could not walk into the hospital, me and my mum had to hold him up. Its becoming abit scary now and we still feel not sure yet, he has not been given any treatment as they have to transfer him to this london hospital for them to decide on the treatment… it really feels never ending, he suffers such bad headaches and all kinds of aches, I wish we could take his pain away and discomfort.

Any advice or positive stories would be good right now xx


Im Steve and was dx PPMS when I was 49. Im 51 now. There is an opinion that PPMS is not the worst MS, just the less common type.

Im under Dr Jeremy Chataway at the National Neurological Hospital, Queen Sq in London and they are fantastic. Everyones MS is different and we just have to be as positive as we can. You will find a good, friendly and kind bunch on here and plenty of help and advice.

I know its a bummer, but when I get down or pi**ed off I try to remember theres always someone worse. Im sorry I dont really know what else to say but some of the more experienced board users will without doubt be responding soon. xx

Hello Steve

I do feel so clueless about all the types of MS and also like you say it affects everyone differently, so i guess we cant get too down about it yet, his being strong about it and once treatment starts, things start moving forward then im sure we will feel better, Its just that first time confusion part where everything feels scary, Its good you think like that, you have to! there are alot people worse off your right and my stepdad has so many people that support and love him, we will get through this hurdle im sure.

Its good that your on here typeing about it as he cannot even type yet, not sure really how bad he has it but we will be positive esp around him, keeping him laughing if we can! time will tell with this i guess.

you saying that your hospital is fantastic, thats really good to hear too… mick should get all the support he can now and his going to the best place to find out more.

Thank you again, x :slight_smile:

Hiya The very fact that your supporting your step dad show’s how much you care. I’m afraid I cant offer any advice on PPMS as I’m SPMS but one things for sure his life’s not over it’s just different, carry on been there to show your support to him as I’m sure he must really appreciate it. Hope he get’s on okay when he goes for his next appt at the London Hospital Take care & stay strong xx

Aw, so sorry to hear that… I’m also most likely to have PPMS. I have not been referred anywhere else just told to come back in a year. However, I have been allocated an MS nurse and I’m waiting on an appt with neuro rehabilitation to hopefully help me a little with my walking.

There is not they can do but help, my GP surgery have been very good with that, I’ve been given an increased dosage of amitriptyline so that helps with getting quality sleep at least :slight_smile:

I’ve also started taking LDN (low dose naltrexone) although I had to get a private prescription on that initially (pm if you want details) but I’ve literally only taken it for 2 weeks so it’s too soon to say but personally, at 43 and suddenly unable to keep up parts of my life (luckily the fitness job was NOT my full time career), I felt I would try more or less anything!!!

On a positive note, in some ways, I also don’t think it’s the worse type… coming to terms wth the fact tomorrow might not be better tomorrow is VERY hard but not having the fear of suddenly or overnight, being struck down with scary symptoms is hopefully something we won’t have to deal with - as my neurologist put it “this sort of crept up on you didn’t it?” - I’d said exactly the same words about it!

Good luck

Sonia x

Hi hun. So now at least you know what the diagnosis is, that`s a step forward…look at it that way, if you can.

I hope the wait to get to see the next neuro wont be too long.

PPMS is the hardest to diagnose, usually.yes it has been thought of as the worst type.

But the difference is that any type can affect people in all sorts of ways.

It seems some folk with RRMS have really bad flare ups, that can last for a long time.

Have a look at the PPMS board. There are some great folk there (as there are on all the boards), who will identify more with your stepdad.

Also, do get an assessment from an OT, for advice and help re the home environment ie safety and an easier way to do everyday things.

luv Pollx

Thank you so much for the advice, im reading it all over and over lol I will go home and show them both, Once things settle down i know my mum will start coming on here, shes abit too stressed right now to concentrate on this, but i know what great support it is and I know she will love it too, also good for Mick that we understand and can help him, His as confused as us right now!

It just helps so much having this support. thank you everyone xx

Awww I am so sorry to hear that they think your stepdad has PPMS.

At least they know now what he d/x is and will know what to offer you all to help.

It is so lovely that you are so suuportive to your stepdad. That will help him and your mother lots. I hope that you are getting some sort of help too to cope with it.

I hope yoyr stepdad gets seen very quickly and that you get lots and lots of support.

Remember, we are always here for you all.

Shazzie xxx

Hi there, PPMS is not the ‘worse’ MS to have. People with RRMS can be much worse than people with PPMS and vice versa. MS is MS whatever ‘type’ you have. Try not to worry too much and take it a day at a time - just make the most of things every day. Good luck to you all - Mick is lucky to have a supportive family. Teresa xx