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New here, and newly diagnosed

Hello everyone, I was diagnosed with MS 2 weeks ago. Although I expected that to be the diagnosis it still came as such a shock, and has really knocked me as I’m only 24. I’ll explain a little of my history. When I was 20 I had about 2 months of slow progression of numbness and pins and needles up the right side of my body from my foot, and then it switched almost over night and went down my left side where it was markedly worse. I had really bad coordination and it was quite painful. Saw my GP at this point who did not seem phased and gave me a 3 month referral to neurology (over the Christmas and new year period I knew this would take longer) Long and short of it I went private to see a neurologist as GP didn’t change the referral to urgent. Saw a lovely neurologist, had an MRI scan of head and neck. He phoned me on a Saturday and put me back into his NHS clinic for further tests, he diagnosed transverse myelitis. As there did not seem to be an infective cause for it when he saw me 6months later said I should be fine and hoped not to see me again. 10months later I’m back at the GP with very similar symptoms down my left side again, get admitted to hospital to have an urgent MRI scan again of head and neck. Told it’s transverse myelitis ™ again (demyelination on cervical part of spine, same as previous scan) and again discharged from outpatients 6 months later. So the previous info is why I expected to be diagnosed with MS, as it had been said to me it can be a precursor to MS having TM. The symptoms felt very much the same as the two previous episodes except it was literally from waist down I had numbness/pins and needles, and difficulty walking. Symptoms were markedly worse on left side again. Had MRI scan full spine and brain, neurologist said there was demyelination at same cervical point, lower thoracic and some starting in lumbar region. I guess I’m wondering if anyone else had a similar pattern of episodes before diagnosis of MS? And how did you cope with that? I get quite upset really unexpectedly when friends ask how I am, I’ve never really been someone to show my emotions, so find that difficult along with the roller coaster of ups and downs I’m having anyway. Any help with coping with this I would be very grateful for. Seeing the MS nurse for the first time on Monday, I have a few questions already to ask, but if there’s anything anyone can suggest as answers they really found were useful and help in the early days of diagnosis that would be great. Sorry it’s been such a long post, thank you for reading.

Hello Sally and welcome.

Sorry to hear about your diagnosis and what you have been through prior to getting diagnosed. My journey is different I’m afraid, I was referred to neuro for chronic headaches/migraine before getting my diagnosis.

I too used to be a private regards sharing my emotions, that’s definitely something that’s gone out of the window Lol. Given that I have moments of breaking down and having a right good cry…often!!! MS people don’t seem to cope with stress well.

Regarding questions to ask your MS nurse Sally…I’m not sure. Hopefully she/he will know the right things to ask you and get you to open up about what’s on your mind. The one I met last year was excellent and knew all the right things to ask and information to give me.

There are lot’s of supportive people on here who will be happy to offer support and share stories. The everyday living link is good to go on too

Chat again xx

Hi Sally,

I just wanted to send you a quick hello. I know this must be such a tough time for you. No wonder you get upset when you talk to your friends about it - but remember, that’s what friends are for, and they would rather be there to comfort you than let you suffer alone.

My daughter is 20 and was diagnosed 2 years ago, so I know how much support you’ll be needing. Everyone seems to find their MS nurse the best person to go to when they’re troubled - not only are they experts on the condition, but they’re also super-comforting to talk to. I would REALLY strongly advise wandering around Google. My daughter can’t even go on this website, so when she asked me to find out about nutrition and MS, I Googled it - and found sites that were full of lies and exaggeration - this would have freaked my dd out entirely!

It’s natural for news of a diagnosis to take time to sink in, so give yourself the time and space you need. Sending you cyber hugs.

V

Hi Sally, I’ll try and keep it brief, but first just want to say I understand your difficult journey and despite now being diagnosed with MS you will get much need support through your MS nurse and the society. I have a slight similar story having been initially diagnosed with TM last year at the old age of 42. I was told also that it may be on onset of progressive MS but this would be observed over 12 months. Anyway having now had numerous test , evoke thing and lumbar puncture which all came back positive I am now being sent for further MRI to see if there are any further lesions. I initially had one and a possible second one, but they were not sure, on the second one so from what I am being told I need two lesions in the spinal area to finally be disagnosed having now ticked the other criteria. The TM initially diagnosed has left me with walking difficulty, hypersensitivity in my legs which burns with serious pain. Balance is bad and mild spasticity in my legs, with the weakness. Oh and not forgetting the imbarrising bladder problems. In relation to episodes I have had just progressive worsening symptoms over the last year. Was wondering what problems you experienced with the TM initially and did you have any improvement. My old friend has recently been diagnosed and is finding the local MS centre really helpful with lots of information and support. He is fighting back and althought he has had to change things in his life he is remaing very positive. I find just knowing someone else and chatting over each other’s symptoms and ways of over coming them is a real boost. Wishing you all the best Jason

Thank you all for your replies, lots of useful advice :slight_smile: Slowly learning to not hide my emotions as much, and let friends help and be there for me. Jason, you’re right having the MS diagnosis does seem to have opened doors to better help and support than when I was being told I had TM. Sorry to hear you had similar difficulties to me with getting TM diagnosis and then MS. My symptoms with TM were severe numbness and and pins and needles. Off balance and lack of coordination. I did not have any loss of motor ability though. I fully recovered after each episode, although I have now realised I’ve basically had fatigue ever since the second episode in 2011. Being a shift worker I put my tiredness down to this, but it now makes sense. Through being diagnosed, I have discovered that a lady I have known for a little while also has MS. She’s been a great source of help simply for knowing what it feels like as you say. Wishing you all the best also Jason. Sally

Sally, Thanks for the info on how TM effected you. I now exactly what you mean re shift work fatigue. I also work shitfts and in recent years found having done a week of shifts, it took me my three rest days to get over them. I thought it was just old age, but now think there was more to it. Thankfully I am now working Monday to Friday so finding it much better. Really glad you seem to be getting support and have a friend to talk to. All my best Jason.