Hi everyone, im Kirsty and two weeks ago was diagnosed with RRMS. Have had a very difficult last 4 months with various symptoms, having two MRIs on my brain and spine, and then seeing the neurologist who was not very informative. She has referred me onto a specialist MS consultant now for which i am awaiting an appointment to hopefully be alot more informed about the condition, especially where my lesions are located and discuss the best treatment options. I have not been referred to a MS nurse yet, is this something that happens once you discuss treatment options with your neurologist? would appreciate any advice of what comes next…Thanks guys
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I think it depends on your area, but for me personally I was seen by the neurologist when I was admitted into hospital, then again in outpatients I was the given an appointment to see the MS nurses. But my neurologist doesn’t organise DMT so I was transferred to another hospital. Then I had a meeting with the MS specialist neurologist who offered DMT but needed to see my MRI, once he’d seen it I was offered a different selection of DMT due to the brain stem lesion. Hope this helps you.
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Hello Kirsty,
Welcome. I’m an RRMSer of 25 years now, thinking back to being dx, doesn’t feel as long ago as that though.
Usually your MRI scan report/s will state if there are new lesions showing. Your neurologist will discuss with you treatment option/s. The MS nurse then discusses with you how your chosen treatment will be administered, they are usually the first point of call regarding anything MS related.
I’ve not taken much notice of the locations for my lesions tbh, it’s always been enough for me to know they’re there tbf, apparently dark lesions don’t show up on an MRI scan anyhow.
Good luck with everything,
JP
I see, I have been told the MS specialist I have been referred to is very good so he will discuss the treatments etc. I have a lesion in the brain stem too so we have that in common. If you don’t mind me asking how have you found the treatment since starting it ? thanks for your reply.
Hiya kirstylouise,
I started a DMT in oct, and because of the brain stem lesion I’m on a high efficiency DMT and the fact in the space of 9 months I’d had 4 relapses. I started kesimpta after the 3 rd loading dose felt like I was coming down with a cold but a couple of days later felt fine. I believe it’s helping which is a relief.
I wish you well for your appointment and to starting treatment. X
I see, yes I have used the online tools to check the certain treatment options and i had noted down Kesimpta being a possibilty. I am sorry to hear the amount of relapses you experienced but that is really reassuring to know your not experiencing any nasty side effects. There is definitely alot to consider but i am hoping once i get some more clarity at my appointment so il understand more. Thank you for your message. All the best.
I see. I am figuring i will be given my MS nurse then once i see the specialist and decide on my treatment and so on.
I hope your journey has not been too difficult for you and wish you the best.
Hiya Kirsty,
I have to say so far I’m very happy with how it’s going, I had a fight to begin with and asked to be referred to start treatment before I lost the use of my legs. My 2nd neurologist is really good, an appointment was made to see the MS nurses to discuss DMT I’d already been sent a letter of my choices and chose kesimpta so I didn’t have to go to hospital every time I just injected myself. It’s helping , Ive had my baseline MRI done, and I’m shortly due to have bloods done to check. The community MS nurses have been given a list of dates for me to be reviewed so they are certainly on the ball. It’s a great Improvement on how I was treated before, but unfortunately my doctors surgery are still letting me down. I guess you can’t win them all. All the best for when you start, don’t read all the stories online see how it is for you! We are all different, and MS affects us all differently. x
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Im so sorry you had to go through that. I am praying my neurologist is prompt and extremely good. I am so glad to hear its going well for you, that is really promising news. I do like the fact you only have to inject kesimpta once a month, that would suit me. Just before you start treatment do they give you another MRI? I hope you don’t mind me asking what symptoms do you suffer with ? Mine started with back pain lumbar, then headaches, dizziness, blurry vision, really heavy weak legs, loss of balance and unsteadiness. Its been a tough 4 months so i pray i wont be waiting too long for my appointment. Thanks for all your advice x
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I didn’t have another MRI until I’d been on kesimpta about 6 weeks so that will be my new baseline MRI. Mine started with increased food allergies, weight loss chronic reflux. Then trouble to fully empty my bladder, numbness in my feet, unable to feel my bladder, woke up feeling like something was smashing my head in ended up in hospital for over 3 weeks. MRI head and spine, lumbar puncture infusion of methyl prednisone. It’s left me with reduced saliva, dry eyes, with reduced corneal reflex, Trigeminal neuralgia, foot drop and neurogenic bladder. It’s been tough, but there is light at the end of the tunnel. I’m hoping I’ll be able to work a few more hours soon. Hope you soon start treatment x
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Hi KirstyLouise40 to our club no one wants to be a member.
Yes, everybody’s journey is different so is the access to healthcare we need.
My treatment has been discussed after seeing my neurologist with my MS nurse. On personal note, I founded rather difficult to pick treatment as I was not sure what will work for me, but no one probably does and it is - pick one and if it does not work try something else.
I’m on Copaxone at the moment but my MS nurse was asking me during my last appointment if I’d like to opt for something stronger. I was not sure but I will ask about it during my next appointment in mid-Feb.
I believe that your appointment with the MS nurse assigned to you will come before your realise.
I can get low, when my MS nurse does not reply to my email but then I remind myself how short of staff NHS is and take a deep breath.
I hope all your questions will get answered soon.
In the mean time, take it easy and do not stress as it the stress what can make us unwell.
All the Best
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I am so sorry you have experienced all of these syptoms, it really is so different for everyone so i am finding out. I think your treatment will really help you and i am glad you are seeing a light at the end of the tunnel, that is all we want right, to live as quality a life as we can, this condition does not define us. I have had a few days where i have felt very emotional about everything so im just hoping to get some answers., therapy and support soon. Thanks so much and i wish you all the best for the future.
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Hi there, thanks for your message. Its helped me to know i can talk to people on here who know what it is like to experience life with this condition.
I hear you, as i have been looking over the different treatments and weighing up what will be the better option for me, as much as i can, so i can at least go to my appointment with as many questions as i have to ask the neurologist. I am praying for a good neurologist and MS nurse who is responsive when/if i should need them. As from reading everyone does seem to have more contact with them once on treatment.
I understand feeling low, as for the last few days i have felt quite emotional and i have questioned a lot. I intend on calling up tomorrow to see if they know when my appointment will be with my specialist neurologist and how long i am going to be waiting, as surely it cant be weeks ?
Thank you for your kind words, I hope you are getting answers to your questions and i would call your MS nurse if you are not getting through by email.
Yes i try not to stress myself, well as much as i can anyway, i am a worrier so tend to worry which doesn’t help anything.
All the best
I really hope you hear soon regarding your appointment so you too can start treatment. We all have good days and bad ones and sometimes it can be a lonely old world. I’ve been quite unfortunate, but you can’t change the past so hopefully kesimpta will slow this down to improve my quality of life. 
you’ll soon be starting your DMT and you’ll have some reassurance that you’re fighting back. Take care and hope your appointment goes well x