Feel the need for congratulations! Today I have finally received a diagnosis letter - only taken 16 years since my original optic neuritis! After years of being told all sorts of things ranging from ‘migraines with aura’ to ‘its all in your head’, I finally have a piece of paper to say I am not mad! Unfortunately it has taken me all evening to decode the acronyms in it! 
I know its weird being happy! .
congratulations (?)
make the most of the euphoria of the arrival of your letter.
you may wish for a confirmation of madness soon.
anyway you will be busy pruning your life - what must i keep/dump, how will i tell people?
all of little relevance.
so welcome to the club!
it is a special club, the waiting list can be sixteen years.
keep happy .
Carole x
Hi, so I’m glad you’re pleased to know at last…it’s terrible that people have to wait so long, I myself was only 6mths, but my poor sister is still in limbo land nearly 10yrs on, like you pushed from pillow to post, honestly it’s just not fare. Good luck in the future, hope you’re as well as you can be,
Jean x x
hi, its good to know whats causing your problems at last. Took me 22 years to get that elusive diagnosis.
Boudsx
but why does it take so long?
doesn’t an MRI scan confirm thongs?
oops - meant confirm THINGS !
although confirming Thongs could be interesting !!
Hello JJ
Congratulations at being finally fully accepted into our gang! We’re so selective it takes some people ages to get past the gatekeeper!! As Carole said there may be times in the future when you wish yourself back into the land when you didn’t definitely have MS. Unfortunately, once you’ve had it in writing, there is no way you can go back into the darkness of limbo.
You probably will have a whole new bunch of things to consider now you have the definitive diagnosis. For example, has it been decided which variant of MS you have? Are you in the RR gang or the progressive, either SP or PP?
If you’re in the RR group, I assume you’ll be offered a disease modifying drug now. If so, here is the decisions aid tool: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Have a look at the various options, it’s a case of weighing up the benefits (in terms of possible relapse reduction rate) against the costs (ie the potential side effects). Of course it will also depend on what options you are offered; this may be affected by the Covid restrictions - many hospitals are avoiding starting people on infusion based therapies at present.
Obviously, it may be that it’s taken so long to be diagnosed that you’ve gone through the RR phase and are immediately diagnosed with SP. If that’s the case but you are still having relapses (ie progressive relapsing), there are still DMD possibilities. You’ll need to discuss this with your neurologist.
I assume you have been given the contact details of your MS nurse? Indeed, you may have already made contact with him/her - often people are supported by an MS nurse while going through the diagnostic process (eventually). If you haven’t got the contact information, try phoning your neurologists secretary and ask for the info.
I wish you the very best of luck as you work your way through the emotional turmoil of being finally diagnosed. As I’m sure you already know, we will help should you need it with any questions or problems you encounter as you wrap your head around the diagnosis.
Sue
You did`nt say what type of MS.
Now you know, it`s just the tip of iceberg.
Hi, I went to hospitals in Wakefield , Halifax and Dewsbury in my early days. Had 4 MRIs over a few years and nothing ever was seen by docs. Ditto for all 4 LPs.
It was when I finally went to The Walton Centre in Liverpool, last year, that a specialist neuro who had more knowledge, expertise and I guess funding, to look for rarer conditions which cause immobility.
He and the consultant radiologist examined the new MRI and saw lesions on my cervical and thoracic spinal cord, which finally gave a diagnosis of Spinal PPMS. He (neuro) said I am only the 2nd person he has seen with this type of MS.
Hence the long, long journey to diagnosis for me.
Boudsx
PS I havent worn a thong for donkeys!
Hi JJ111,
Welcome to a very exclusive club. Really don’t want any new members but sadly don’t think that will ever happen until they find a cure.
Such a relief to know it’s not all in your head.
Hope you’ve got a good neurologist and an MS nurse that will look after you and guide you.
Write every symptom down along with any questions.
Stay safe.
Jen
MRIs are very very sophisticated but only detect Thongs constructed in Brillo pad material
Congrats on the diagnosis. That is not way too long to find out. At least you now know what to focus on. All the best Mick
Mick
argh! the very idea of a thong made of brillo pads has come from a very sick mind!
all that pink froth will be messy!
not to mention a bit stingy!..not stingy as in mean but stingy as in nettle rash!
Boudsx
Bouds
the thought of a thong made from brillo pads made me clench my bum!
Hi I wonder if anyone has heard of the Canadian Pam Bartha who recovered from MS 30 years ago and posts a lot of freevideos online on how she dealt with it?
CCCarole…I can but just about remember the clenching of my bum…
Sheilamba…I think if anyone recovered from MS, they never had it in the first place. MS never gets better. Or do you mean she improved?
Boudsx