Well its been a surprising couple of weeks. 25th May saw me with a sore wrist which both gp and i thought was just a strain. Then pins and needles.
Fast forward to 5th June, MRI and lumbar puncture and an MS diagnosis totally out of the blue.
Now I’m home, dont really have any idea what to expect and apart from a gp appt booked, no plan.
Hands and legs not working, exhausted and feeling useless.
Had methyl preds but no sign of it working yet 8 days from 1st dose.
What do I do next ?
Stay positive Janet.
Hi welcome to the site I am sure you will get lot’s of help to see what to do next. What happened with me was I woke up one morning with double vision and went through the same as you. visited by MS nurse and got an appointment with Neurologist, still have them but get no meds, think it’s my age.
Good luck with it all x
This is ‘keep calm and carry on’ territory, I think.
Sorry you have had this bolt from the blue. Steroids can take a while to work, so don’t panic, or try not to. I am sorry that you have been pitched so rudely into a new world; it is more like the old world than you would think, once things have settled down a little and you have reached calmer waters - and you will reach calmer waters.
But this is a rough time for you, bound to be, and it is probably just a matter of getting through it day by day until the shock starts to fade and you find your bearings - and you will find your bearings, really you will. Life goes on.
Hang on in there.
Alison
Hi Janet
Your experience is very to mine, and a lot of others, as I knew there was something wrong for a long time before I was dx so it was a relief to finally stop being labelled as a hypochondriac!
For you this must have been a terrible shock and I can’t begin to imagine what you are feeling at the moment! But try to remember that, even though it is incurable, there is so much that can be done to manage MS. and what’s more, there are many promising treatments in the pipeline.
There will be bad days (I’ve had one today, my husband took the brunt of it!) but remember they will pass. You won’t be alone, when you feel that no one understands or you need to let off steam there’s always someone here to listen.
Hopefully you will have an MS nurse, they can be worth their weight in gold, but even if you don’t you should get plenty of support, if it’s not offered ask for it!
The most important thing at the moment is to take your time feeling what ever you need to feel and take the time to look after yourself.
Sending hugs of support
Tedie x
Welcome to the Very Special People club! It must have been a complete shock, a diagnosis coming out of the blue like that. For a lot of people it’s a relief, to finally have a name put to this thing that’s affecting them, and you can start working out how to live with it. I’ll not kid you that it’s easy - I don’t think it is - but it can be worked out. I had methyl preds myself, and it did some good to recover from the relapse - although the gitty little side effects hid behind the door for a day or two, and then all jumped out on me on Day 3, with baseball bats. Hope yours are staying behind the door…!
Hi Janet
The diagnosis must have come as a real shock. I’m sorry you have had the diagnosis.
First of all, steroids can take a while to do their stuff. I also remember when I have been on them in the past my mood dropped considerably for a few weeks. In fact I was really horrible for a bit. Perhaps the steroids are affecting your mood which is bringing you down, although it is probably more to do with the emotions of the diagnosis that has come out of the blue.
It will take you a while to get your head round the diagnosis.
We are all here for you if you have any questions or if you just need a shoulder.
I was diagnosed 10 years ago and I have wonderful life so don’t worry too much you will be fine.
Be positive and happy.
Shazzie xx
Hi JanetV
Sorry to hear about your diagnosis, such a shock, will probably take a long time for you to come to terms with it.
Have you got a MS nurse, ask to see her, she will be your main contact if things change.
Joining this site is a good start as there is so much knowledge and advise that can be got from people on here.
Stay positive.
Jen
x
Welcome to this very friendly and helpful board, Janet. I too am so sorry that you’ve had this diagnosis and it does seem to have all come about terribly quickly. I had about three months with a ‘probable MS’ dx before I got the final confirmation at the beginning of the year. That was bad enough so I can only imagine your shock at the speed of events.
Hope you can get a neuro, MS nurse and possible DMDs as soon as possible.
Louise x
Thank you all for the lovely kind replies. It has been a huge shock and is going to take some adjustment, but knowing that you are all there for a chat and advice really helps. For now im taking it easy and trying to get past these symptoms. Sure I will be getting to know you better x