well I’ve had all the tests and the results are back, lesions found in my spine and inflammation in my spinal fluid according to the letters ive been sent so far, I see the neurologist again Monday to hopefully find out what’s wrong with me, I’ve gone from walking loads each day to wheelchair/sticks and stair lifts in less than a year, I am looking forward to finding out what’s wrong with me “hopefully” but extremely nervous at the same time, I keep telling myself a diagnosis isn’t gonna change what I am living with daily but it makes it seem so real and ive kinda been burying my head in sand that once they know what’s wrong they can fix me, did any of you feel the same apprehension to finding out
To be honest flappyfeet, when I was diagnosed, I pretty much knew what it was. Given that I’d had all the tests 5 years before and several relapses in between. The neurologist asked me what I thought it was, I said MS, he said, ‘so do I’.
Some people find a diagnosis of MS in some ways to be a good thing, at least they come out of limboland, which I’ve heard is a pretty horrible place to live.
And as you say, regardless of the diagnosis, you can at least get some treatment. I would hesitate to say they can ‘fix’ you, whether it’s MS or not, a quick fix isn’t terribly likely.
But, whatever the outcome, I wish you well for Monday. I hope you get some positive news.
Sue
in my head i know what the outcome will be, looking back over health problems ive had at various times over the last 15 years im pretty sure ive gone through the rrms flare up stage and im now getting worse slowly so i am expecting to be told its ppms, although my nurse at gp is convinced at 43 im to old to be diagnosed with MS, we shall see i have prepared myself for this im more nervous that they will tell me they dont know what is causing this than an MS diagnosis
It’s absolute nonsense that you’re too old for an MS diagnosis. People are diagnosed at any age from childhood (though rare) to their 60s and beyond. And if you feel you’ve had MS flare ups for 15 years, then you were 28 when it began. Which is younger than I was at the start of my MS.
If you are diagnosed with MS, and you’ve been through the RR phase, then is really should be called SP. However, many of us have thought/wondered if we had moved on from RR to progressive, and been wrong.
I suspect that if you are given an MS diagnosis, the safest option for the neuro and for you too, is to call it RR unless and until s/he is absolutely convinced that it’s progressive.
In my case, my neurologist has very firmly stuck to the RR label whilst I was still able to take DMDs. It’s only since the last one failed (side effects), that he’s finally labelled it as progressive.
Sue
- As sue says you are never too old it just appears to be that sometimes they fob you off with another named illness,rheumatism,menopause,nerves even fibromyalgia then they can decide to defer you to a neurologist,only person who can d x .so lots of good wishes for Monday.
hi flappy feet
good luck for tomorrow.
carole x
Hi,
You’re absolutely right, a diagnosis isn’t going to change what you are.
You’re not suddenly going to evaporate, whatever you are told. However, what you learn tomorrow can help prepare you for the future.
Which is lot better than not being prepared.
That’s my attitude, anyway.
All the best,
John
Not sure if this is what you want to hear flappyfeet - I am 60 years old & was diagnosed with PPMS in 2017.
After serious thought, I suspect it started hitting about two years ago. Not sure what the solution is (probably none) but I have a major weight lifted from from my thoughts. I know what is happening to my body & I can plan accordingly.
Good luck.
Your practice nurse is talking BS about being too old for a diagnosis! I was diagnosed with RRMS when I was 46 but, like you, when I look back I was clearly having relapses for a good 10-15 years before. I am still RRMS although the accumulated damage from relapses prior to treatment means that there has been an overall physical decline. My consultant describes it as RRMS being like a staircase that you can go up or down under your own power but SPMS or PPMS as being like being on an escalator that doesn’t halt and goes in one direction only.
Good luck for today. I think you will be quite surprised at how getting a formal diagnosis after so long in limbo can be a positive thing no matter if it just confirms what you already knew yourself.
Good luck with getting a diagnosis for what you are dealing with. Whatever it may be, it can be useful to get a name and you can then work with the professionals on a plan of action.
All the best
Mick
i finally have left limbo and as you said it is a massive relief to now know what is causing my problems it is PPMS he is referring me to MS nurse and for DMT x
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Hi
I’m happy that you’ve left limbo, but obviously sad that you’ve now officially joined our gang.
But I’m confused by the PPMS label plus DMDs. You can’t get a DMD if you are diagnosed with progressive MS. The qualification is always RRMS and having had relapses within the last two years. If you are PP, a DMD won’t help, as the intention of a DMD is to reduce relapses and the severity of relapses. And with progressive MS, you don’t get relapses. Plus, every DMD has the potential at least of giving you side effects. So you’d be taking a drug for no good reason with possible side effects.
Sue
he didn’t really go into it in any great detail and seemed like he couldn’t wait to get me out the door he said ms nurse would discuss treatment further
hi flappyfeet
i have heard that some neuros are prescribing some DMDs to people with PPMS.
i don’t think it is the full range of DMDs on offer though.
ask him what his reasoning is and let us know on here.
he sounds like a progressive thinker.
good luck,
carole x
Hi
Hopefully your MS nurse will have more info for you and will be in a position to give you time and advice with regard to drug therapies.
Sue