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What to expect

Good morning all,

I have recently been diagnosed with MS, for sure, Spinal lesions T10/11, Brain lesions T2 and Oligoclonal bands from the Lumbar Punch, still not sure which variant of the disease I have, raised the question with my MS nurse, still unsure. I struggled along for a couple of years, difficulty walking, burning thighs, lower back numbness, balance issues, bowl and bladder urgency, where my main problems, but I managed to survive and keep working. About three months ago, my condition worsened significantly, which has been described as an aggressive re-lapse, this issue was all I had before, but the addition of numbness from my toes to my waist, making walking almost impossible! Had a fast assessment at an open MS clinic, put on Steroids straight away before I left, also was given a EDSS score of 6.5. The steroids have taken the numbness away, but left the symptoms intact. it has been a whirl wind now, still all new to me, have no idea, what my MS is, other than the problems it presents me with, it has moved on quickly now, seen an incontinence specialist, got physio booked, got a chest xray booked and more bloods coming and I am now going on Ocrevus in the new year.

I think the reason for posting is, this is all so new to me, and has moved so fast in the last twelve weeks, I have no idea what’s to come and getting tangible advice is proving difficult. Any advice on the prospects is most welcome.

Hello NickE, and welcome to the forum.

I’m sorry to read what an awful time you’re having with your MS. As you may already know, the condition is quite variable and everyone’s experience is different. I’m afraid no one can predict what will happen next, but there are many on this forum who will have experienced similar symptoms to your own, so you are amongst friends and will be understood here.

As to which variant of the disease you have, I think it’s probably a bit early for the consultant to be certain; I wasn’t told for a very long time. The medics seem to need to monitor your progress for a while before deciding whether you are PPMS, RRMS or SPMS; I don’t think it is apparent simply from the test results, but I could be wrong.

I’m intrigued to read that you were treated at an open MS clinic, I’ve never heard of one of those, but I live in a rural area and am guessing that was in a city.

You seem to be seeing all the right medics and getting tests and treatments, so just hold in there. It might be useful to keep a timeline of main events and any new symptoms (just a summary) to take with you when you next see your neurologist, so you don’t forget anything important; memory alone can often let you down. Also make a note of any questions you want to ask.

Meanwhile, keep reading the websites of the MS Society and the MS Trust, they are by far the most reliable sources of information. And keep an eye on this forum, we all share experiences of symptoms, treatments and just living with MS.

Hoping things improve soon,

Ben

Thanks Ben, I guess I was looking for some reassurance.

hi NickE. Ben is right we are all different and can’t predict the future. I am new to all this as well. You definatley need to keep a list of all the symptoms so you don’t forget anything. My list seem to be getting longer all! Also like Ben said look on the ms websites and watch some of the videos on youtube about living with ms. I have learned a lot from researching this weird disease.

Thanks for the response deb.74, moving fast now, start on Ocrevus in the new year, if I can get some X-rays done tomorrow, all being ok.

Hi NickE. i had an mri last December and then my I was sent to see a specialist who did loads of tests. I am going to see my dr in January. My symptoms have increased rapidly since May! My latest symptoms a driving me mad! My wrists are jerking violently everytime I move my hands and have got a nastly limp which is causing me to keep losing my balance.Good luck with the x-rays. Happy Christmas

deb.74, good luck, I hope things progress for you in the new year, they have moved pretty quick with myself, have you been offered physio, it has helped with walking (foot drop) and balance for me, still slow and steady, but only on a walking stick now, not crutches :-). have a great Christmas and as good a new year as you can,

Hi NickE. I haven’t been for physio yet. My doctor did send me to see someone at the hospital to check a few things out but I wasn’t anywhere near as bad as I am now. I have now started to struggle with my balance and do use crutches when my balance is really bad. I now I should have gone back to see the dr ages ago but I am one of those people who has to feel like they are dying before they see a dr! Happy Christmas!

deb.74, I now have a dedicated MS nurse, who is excellent, and coaching me through nicely, I knew nothing at the onset, but she helps me a lot, I leave a message on an answer service, she gets back to me the same day usually, and decides if I need to see the Dr (Neurologist) or another specialist, works for me and got me through my last aggressive relapse. All I can say is accept all the assistance they can give, I accept no one knows your body better than you, but they do know what you are going through, from experience. I am hoping for a better 2020 than 2019, and wish the same for you, enjoy the new year.

Hi NickE Happy new year! I had a brilliant day yesterday(not). Yesterday morning my legs seized up and I could hardly walk for a couple of hours. It was very painful! Eventually my right leg did get better but my left leg is still a bit tight!

hiya I’m recently diagnosed. I was commenced on a trial of steroids they made no difference whatsoever. I’m wondering if this is common for people. I’m not sure that it is . I’m rather disapointed

Coldol,

I’ve been through the steroid treatment once recently, it did not happen overnight, but within a week or so, the numbness in my legs from the toes to the waist went and the pins and needles went. within two weeks I was on my feet better and able to drive again and walk with a stick.

hopefully you will feel an improvement soon,

good luck.

I wanted to provide a quick update, I had bloods, lots of bloods, chest X-rays on Christmas eve, the results are back, and I failed one blood test, delaying my DMT start, until a retest of the sample is complete. My MS, largely affects my legs, walking is really difficult, the steroids and Baclofen have been helpful in reducing numbness and stiffness, but legs are still not anywhere near normal, any prolonged use, and my thighs are on fire. I now have a diagnosis as well, relapsing (no remitting) MS with Sequelae, what ever that really means, but since I got in the system, things have moved quickly, it is work I struggle with, but hoping the Ocrevus treatment will eventually bring some sense of normality back, well thats the hope.

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