Hi Guys. Had appointment with Neuro 2 wks ago…after a vey long examination and what i can only say was an inrerigation…he said that in his opinion i have PPMS but will carry out further MRI Scan of brain and spine …to rule it out, but from his experience he is pretty sure of the Dx. Im a bit suprised by this as i thought they didnt say much till they were sure after MRI’s. Mac
Hi Mac51,
I can only say that the interrogation must have clearly pointed him in that direction, from my own experience my general neurologist only confirmed the diagnosis after my MRI scan of head and neck, his chosen words were the results are ’ Suggestive of MS’ then I had optic nerve test, Lumber puncture & blood test then it was confirmed, I matched all the symptoms from this site before my diagnosis.
Do you think you have MS?
But yes I believe they usually wait for the above test results.
Take Care & Share
Pauline
Hi Mac
I imagine he strongly suspects ms from your examination and interrogation but they usually wait for positive test results before they will say you definitely have it. Did you suspect this dx or was it a shock? Most of us found it very difficult to accept and cope with at first, just remember you have a very friendly group of people here who’ll help and support you as much as we can. Take care
Cath xx
Hi Mac, I agree with others… must have strongly felt you fitted the MS criteria with symptoms only… however it’s not that unusual to be told it ‘might be MS’ before they are sure. I was told that after MRI and they did a lumbar puncture to confirm. Did you expect it to be MS? Did you suspect PPMS? Don’t fall into thinking that PPMS is the ‘worst’ MS… lots of people think that but it’s not necessarily so. For instance very aggressive RRMS can be extremely disabling. For most of us with PPMS, progression is relatively slow. I only notice progression when I look back to a particular event… like the other day I realised I’ve been living in this flat for 4 years… and then remembered when I first lived here I could still walk to the shops. I now use mobility scooter… BUT the point is, I didn’t wake up one morning unable to walk to the shops. It was a gradual process where it became a harder and harder, and then I would put it off as was too hard… in the end it was just easier to get a mobility scooter… and realised then how much I had been staying in because walking was so hard. PPMS, like other types of MS, is very different for everyone. Your PPMS will be unique to you… so don’t go comparing yourself to others. We have one user on here who’s had PPMS for over 40 years and is still fairly mobile and living independently. Sorry for prattling on… I really need to do a couple of things and so am using you as my excuse!!! Come back and tell us how you’re feeling about it all… you can come on here and discuss anything… we’re a nice little gang and you’re very welcome here whatever the outcome of tests. Take care, Pat xx
After i read the book on what types of MS i knew it was PPMS, I then received the news after I had it for a year, now ten years on neurologist said you definately have PPMS , thought could have told you that
take care
trish
Hi Mac
as with all types, ms is different for everyone, whereby we may have similar symptoms, our progression varies, mine like a lot of others has been a slow decline.
i do agree with Pat, in the respect that you dont suddenly wake up and cannot do things, but when you look back, you realise that things have changed, but you make adjustments to suit.
you are amongst good friends here, so please come back witu any questions, I am sure someone will be able to offer advice.
welcome to the forum.
Pam x
Thanks Guys, the neuro i saw was a MS specilist which again was a suprise as i was expecting to see a general one first, i had a good idea in my head what was wrong but you can never self DX but also picked up a lot of infor from you guys on the forum which i truly greatful for the support, but its still a bit od a shock at my age (63)… Mac
Hi Mac
I was referred to neure after spine MRI, he asked questions, did a few tests and sent me home wth steroids an “likely” MS.
I went back after brain MRI and was told MS for sure but we’ll have to wait and see with the type, so it seems that is quite normal.
Sonia x
Hi Pat and Pam yeah thanks for your comments about suddenly not being able to do things, its not been like that but over the years ive noticed that im not as active as i was slowed right down effort to walk and use my hands along with other things like optic neuritis, pain, dizzyness, being clumsy and speach problems, thats what prompted me to see GP as id had enough of not knowing what was going on. The guys on here are amazing and i certainly will stay in touch what ever the final outcome. Thanks to all of you for your advice . Mac
You’re very welcome Mac. Just want to add that PPMS generally effects older age group… they usually say 40 plus… but I think many of us are dx in our 50’s and certainly some in 60’s. I’m 60 and was diagnosed at 54… but had symptoms for years. Like you I didn’t see GP till things were getting pretty bad. Saying that we also have some much younger folk on here… so as usual with MS, it doesn’t stick to the rules! Very glad you’ve found us. Pat xx