Hi my name is Jess, I recently got diagnosed with MS, I’m not sure what type yet, my symptoms came on very suddenly within the space of 4 days! I never experienced any MS symptoms before, so being diagnosed with MS was a massive shock to myself and my family. I’ve recently just come out of hospital and am currently at home now but I am struggling with day to day activity. I am in a fairly new relationship and am struggling coming to terms with the impact of what MS will bring! I feel so guilty that I’ve put this on him, I understand it’s not my fault but I can’t help feeling this way right now. Does anyone else have this feeling?
Hi hun bit of a shock, are you in the UK? Its very unusual to get diagnsoed after 4 days. Usually they like to see how it pans out…macdonald criteria usually having to be met.
can i ask what happened?
As to your partner I would be inclined to wait and see what happens as you could be more likely be put on medication that will slow down onset of this disease.
Hunny how can it be your fault, if your partner loves you they will deal with it with you.
I had a shock when after 16 years of struggling to get a diagnosis my neuro told me casually you have PROGRESSIVE MS, he didnt say PRIMARY PROGRESSIVE LOL. that one missing word made my blood pressure hit the roof lol.
BUT i was in shock when i was told i had the rare form of MS PPMS.
so i understand you, but i had time to get used to it all you havent even had time to draw a breath yet, so take some time to let it all sink in before you worry about relationships. xxxx
Hi yes I’m in the UK. it’s just the most crazy thing I woke up with a shooting pain down my left arm just didn’t feel right, it had a tingly sensation and was numb! I just assumed I slept funny and that was it, got on with my day went to work. Next morning I woke up and had the same sensation in my right leg, so I went to A and E as I knew there was something wrong, they checked me over sent me on my way home and said it was just tennis elbow! Anyways next day I woke up and the pain went to my back and left leg, so I had no sensation in both my legs back and left arm. Went back to hospital, at this point struggling to walk, they kept me in and wanted to do an MRI scan straight away and they found I had two spots on my brain and one on my spine. Seems like it was the one from my spine that is causing the problem! Had to have a lumbar puncture done too, I only got discharged from hospital on Saturday, they have put me on steroids for now which has eased the pain a little, but I can finally put my left hand in a fist and have movement in my left toes which I’m over the moon about
By the way thank you so much for replying I’m really struggling mentally as it’s all happened so quickly! It’s so good to know that I can speak to people on here.
Someone always here to help you hun. Its a family.
wow not surprised your are shocked. Now i take it Spurs girl is a footy fan lol. Or hum horse rider lol. just kidding.
If you need support just shout out ok. xxxx
Hi Jess, sorry that you are having a rough time. It can be a bit scary and a big shock. As for feeling guilty; whilst I recognise this from my own experience, you should feel as guilty as if someone knocked you down and broke your leg. Sad, bad and there are consequences but not your fault. (How would your partner respond if the situation was reversed?) It is good to get a diagnosis quickly, that gives you more options to manage your condition. Steroids tend to be used to help your body to repair itself. You could try looking into DMT options Disease modifying therapies booklet | Multiple Sclerosis Society UK (mssociety.org.uk)
Discuss the way forward with your medical professionals. Do NOT worry about making a fuss because here are long term consequences involved.
Thank you for your reply, yes I was looking on here about DMT options, Don’t really understand all of it but will wait for my MS nurse to give me a call and go through it. Again thanks so much
I am 100% a footie fan lol. Thank you for your support xx
great post Mick i so agree. We pay for the privilidge of the NHS system. I never worry about making a fuss, but suppose overall since my journey have been lucky as always been treated with respect apart from two MS supposed experts who I saw privately who didnt know MS from their elbows lol or whatever the the saying is.
you go girl, are we bringing the cup home?
anytime you need support just shout hun, always someone here to help you. xxxx just be open and honest and communicate with your partner ok. xxxx