I had my first neurological episode in Feb with numbing to my face, head and lefthand side of my body. Lost the sight in my right eye (thankfully it returned after about 6weeks) Had CT scan, MRI and lumbar puncture - MRI showed lesions and so CIS was diagnosed with appointments with MS nurse and neurologist in place over the summer.
Symptoms still carried on - whole body tingling, tightness in my head, double vision in September. I knew i wasn’t right.
Repeat MRI October and today the letter that diagnosed me with MS.
Despite knowing that i wasn’t right and it was a possibility it was a shock and i’m still in shock. Ive been onto the MS Society and MS Trust and have downloaded and ordered lots of resources so i can begin to understand the condition more.
Positively i can now look forward to some treatment which will hopefully take the edge off my symptoms.
ANyone else on here newly diagnosed? any advice to help me, help my family understand?
Give yourself time to grieve, and then accept that it’s not the end of the world but that you may, over time, have to make some changes to your lifestyle.
Stay away from Dr. Google and get your information from legitimate MS sites. Your doctor will (hopefully soon) discuss disease modifying therapies (DMT’s) with you. They’ve made a lot of advances in medicine over the years, and there are some wonderful drugs out there now that will help reduce future damage.
Above all else, keep reminding yourself that you’re the same person you were before the diagnosis. You just have a name for your condition now.
thank you, ive already had an information booklet from the MS nurse giving me some reading on the drug options and an appointment through today for 2nd Dec so i can’t fault the support i am getting. I just want to find some else who has been on a similar journey recently to talk to.
Welcome to the forum. Sorry that you’ve had cause to join us.
I’m not exactly what you’ve said you’re looking for, ie someone newly diagnosed to share experiences etc as I’ve had MS for almost 25 years now. But I’d reiterate what Norasmum said about information from reliable sources and to get on a DMD as soon as possible. (Have a look at MS Decisions aid | MS Trust if you haven’t seen it already - there may be information that you don’t already have)
With regard to talking to your family, have a look at Telling your family | Multiple Sclerosis Society UK It may help.
Take your time getting your head around the diagnosis. I’m not in the slightest suggesting that it’s necessary to ‘accept’ the diagnosis. Personally I feel that accepting something that’s moved in with no invitation, and frightens the life out of you is nonsensical. It doesn’t deserve acceptance. All you can do (in my opinion) is learn to coexist with the bugger!
Best of luck, keep coming on here and asking questions. If we can help, we will.
Hello sweet. There is so much to take in, when you start reading up on MS. But try not to overload your brain with it all.
Best advice is to pace your activities…get the best quality sleep you can and accept help when it is offered.
Quite a lot of us get symptoms and issues well before we get the diagnosis…22 years in my case…so we do get a bit of warning. Even so, the diagnosis can be devastating.
Having said that, there is still a good life to be lived…just a different one than we may have I imagined.