Just Diagnosed - My Story

Hello All, (my return button dont work so cannot paragraph, sorry) I posted quite awhile explaining my symptoms and trying to find some answers. My symptoms started last Feb with double vision and following that 3 more attacks of sensory and weakness. I waited a very long time to see a neurologist (months) At the first appointment (May) I had the usual tests, walking heel to toe etc. The neuro decided to do a brain MRI and lumbar puncture, to which he said he was sure the results would all come back negative and i’ll be one of his mystery patients. Had MRI etc all in one day, MRI was fine but they had some trouble with the LP and ended up taking 1 1/2 hrs to do it. Was in pain for a couple of days after with my back and had headaches. Didn’t hear anything from the hospital for 6 weeks so I thought ‘no news is good news’! I contacted the hospital myself because I was getting impatient and they booked an appointment for me for the next week. I had told my partner not to come to the appointment as I was sure everything was fine! The neuro told me that my LP had come back positive but the reason I hadn’t been contacted is because my MRI hadn’t been reported yet. The neuro got the professor to come in and take a look at the scan for me and he found and showed me 4 lesions, one exactly where the double vision had come from. The neuro and prof informed me that I had MS and started explaining but I had switched off! Currently im still in abit of shock and doesn’t feel real at all! The prof recommended that I start treatment asap so I have appointment with the MS nurse and prof in the same week (aug) The news didn’t hit me for a few days until I received booklets and an appointment for the MS nurse and all her contact details and the reality of it all set in. I had a good cry on my partners shoulder and talked about how he and I felt about it etc. I come to the conclusion that MS is very unpredictable and not knowing what and when things are gonna happen to you is very scary but life itself is unpredictable so the same can be said for absolutly everyone! No one knows what lies in the future for them. I feel that im lucky to get a diagnosis so quickly as I know being in the limbo is frustrating and upsetting. I refuse to let this drag me down and everyday that I wake up and feel ok is an absolute bonus :slight_smile:


Sorry to hear of your diagnosis. It does take a while to get your head round a diagnosis, sounds like you have a great postive attitude about all of it though. It’s really good you have a partner to share things with, talking about my worries helps me lots. Like you say nobody knows waht the future holds, so all we can do is take it one day at atime and hope for the best! It’s really good that you are being offered treatment quickly, I am waiting to start dmd’s also. I see it as a way of getting a bit of control over the unpredictable nature of MS. I hope your appointment with your nurse goes well and that you contine to wake feeling ok :slight_smile:

Were here when you need us.

Laura x