Well today was my neuro appointment and after 4 years of random symptoms, being told to stop wearing underwired bras, possible carpal tunnel, numerous physio appointments, 2 MRIs and an initial diagnosis of Clinically Isolated Syndrome, I have officially been diagnosed with MS.
Thanks to rizzo for pointing me in the right direction with the msdecisions website, was very useful as we did discuss DMDs today, I am now waiting for an appointment with the MS Nurse to go through everything again and start on them soon. The neuro told me that the last MRI showed an active lesion and therefore wants to get it under control sooner rather than later.
I was fully expecting her to confirm the diagnosis today but I still cried my eyes out on leaving the hospital and then again when I phoned my Mum to tell her, I had prepared myself as much as I could. I’m not sure whether it was relief, or just the fact with an official diagnosis it is now a reality.
For all those still waiting for answers, it has taken a year from my initial neuro appointment to confirm this so bear with it. Although it takes a while you would rather they are certain about the diagnosis than miss something else it could be.
I’m glad you have reached this stage and can now get treatment and support. It must be a relief but I can understand the tears too. All the best with your treatment, I hope it all works out for you.
Hi Rufus, yes expect a rollercoaster of emotions… even though you were expecting it… I was expecting dx too… it still is a huge thing to take it. One moment you feel relief & very postive and the next you get a surge of panic. It is normal. Go along with the emotions. Don’t fight them. It gets easier with time (I promise).
Good luck with the DMDs and glad you finally know what’s going on.
Thanks everyone, I would say it’s nice to finally know as my GP was saying that all the different symptoms were stress related at one point, but it’s not really the diagnosis anyone wants.
I’m back to work on Friday and some of my colleagues will ask how the appointment went so must keep it together that day!
Fingers crossed the DMDs don’t give me too many side effects.
I wish you well for your treatment. Sorry about the diagnosis but at least you know what is actually going on. Some of the things you’ve said really resonate with me, I am waiting for results. Thank you for letting us know your results on what must have been a very tough day for you. Sam x
Glad it went well, albeit not exactly what anyone would hope for
Brilliant that you were able to get straight onto talking about DMDs - sounds like a neuro who’s on the ball
You’ll probably have to stock up on tissues for a while, but don’t worry, as Pat said already, it’ll get easier. Take it one day at a time - it’ll be OK.
Sorry you have joined the good ship HMS MS but welcome aboard.
I would advise with your work colleagues that you tell them that alot of the symptoms are invisible, and while you may look ok on the outside it doesn’t mean you are really struggling on the inside.
Depends on your work and relationships within work as to who you tell what,but work on the assumption most of them will know nothing…except worst case scenario.
Be kind to yourself,however prepared you were its still a huge shock to the system
Commisserations on the diagnosis but you are probably relieved that you know what you are dealing with now. It will be a shock for a while but give yourself plenty of time to get used to the idea. Hopefully the DMDs will help! Take it a day at a time and be kind to yourself! Teresa xx
