Tomorrow I am seeing my Neurologist for a follow up appointment to a recent MRI.
What questions should I be asking as in 18 months I`ve been diagnosed with RRMS then PPMS 6 months after and now this.
Of course it depends what the outcome is of the MRI but if they are not sure then I need to be ready.
Or could it be to see if the PPMS has progressed but I don`t think it has as I feel better now since the diagnosis. Should I keep that to myself and say nothing.
I don`t want to come away without answers to my condition.
Scudger, write down everything you want to say & ask before you go. As we all know it’s always stressful when we see the Neurologist, especially when you’ve got all your confusion with dx. Would be well worth 5 mins to write all your questions down & reel them off tomorrow, that way you will cover all bases (my mum had an inquisition!) she did get answers though, glad she did, I was fully informed when we left. Good luck, let us know how you get on Tracey
1 Like
Scudger
If you think that maybe it still could be RRMS, or even if you done, try to write down some dates that various things have either happened, or perhaps as symptoms have improved. If you can clearly say what has improved and when, it will make things a bit clearer for the neuro. Rather than going in and saying, ‘I thought I couldn’t improve and yet I have’!
Could some of the improvements also be the result of changes you’ve made in your life, dietary, vitamins, exercise, etc? See if you can pinpoint what has happened and whether there could be any external reason for the improvements. I know a while back you were wondering if it’s even MS at all since you don’t seem to have followed either an RR or a PP trajectory.
Good luck for the appointment. I hope you do some out with some news. Let us know how it goes.
Sue
1 Like
Well it`s PPMS as it was last time.
It is very very slow if any progression at all but that`s good news in a way. Basically I could stay pretty much the same without any progression for the rest of my life. Also from time to time the symptoms could ease up and almost disappear.
So, at least now I know what I`m dealing with and bye bye limbo land.
2 Likes
Hey Scudger, your cats know how to party like lions! I was curious to know how they decided in the end whether it was PPMS or RRMS?
All the best to you.
Blue Marble
I`m sorry but I never asked.
I can only guess that Ive never had a relapse and the very few lesions showing on my MRI. Ive never had a DMD referred to me either which as far as I know is linked to RRMS only.
I think also because there is no change in my condition and symptoms in 18 months may have something to do with it.
I`m now 56, so I was originally diagnosed at 55. PPMS is usually later in life.
I suppose really the question is what are the differences between RRMS and PPMS.
And some might question whether they are in fact the same disease at all since they follow such different disease patterns.
Personally, I don’t give a stuff whether they are one disease, two, or in fact many.
It’s crap having MS of whatever kind.
I suspect that you’re both relieved to get the PP diagnosis confirmed, and peeved to have had this second period of limbo, when surely we are only supposed to have one each.
Regardless Scudger, I’m sorry you’ve got it, but on the other hand, this community is better for you being a member.
Sue
2 Likes
Dear Scudger, I am beginning to realise that MS is a roller coaster. I have a neurologist who is not prepared to say what type. He believes that it is old fashioned and that I need to live healthy, exercise well and wait? my advice is to write all of your questions down and take a pen to write the answers. Take a friend too, or a hospital chaperone to be your advocate and they can ask questions too. Good luck x
Hi Patience
my appointment was on the 26th (as above). At least now I have a confirmed diagnosis which is a lot better than being left in Limboland.
The downside for me is not really living but just existing. This is mainly due to lack of finances as I`m unable to work and rely on benefits. Despite my PPMS I am a full time carer for my partner Dee who has Dementia. We get by on our income but it is nothing compared to when we were both working. I was a Carpenter and she was a Chiropodist.
I just need to find a way of getting an extra worthwhile income to start living again.
Any ideas anyone?
Hi, what a bummer that you two have 2 horrible, incurable conditions to cope with.
You may not have the careers and income you imagined, but you have each other and us barmy lot to talk to.
pollsxxxx
1 Like