Well i was diagnosed with MS last thursday and if im totally honest it has been bit of a whirlwind since then! This is my first day i have had alone with my own thoughts since thursday and i think the reality is really hitting me. I have had problems with my back for years after i had a disc removed about 20yrs ago. I have had two reassessments on my back in last two years, last one in July, id like to say that was the start of this journey but wasnt! Last July out of the blue i had an episode of optic neuritis which was diagnosed after an MRI head and eyes, which scared me as had no idea why an when it was mentioned to me by my neurologist if i had a second episode it would be classed as MS i was petrified!! But on that occasion it was claased as an clinically isolated syndrome. I went for reassessment of my back to our local Musculoskeletal service in July this year as things didnt feel right, ive always had reduced sensation in my right foot since my back surgery but now i was worried as my right leg doesnt have same sensation as other leg. Im clumsy at times, and my pain was different to normal. Had the assessment done got referred for full spine MRI, and repeat MRI head. Follow up with neurologist confirmed i had new brain lesion and somethjing about the slice in my spinal cord was not as grey as it should be. As a result of this and some symptoms i now have MS but she feels i have probably had it for quite a while! In some ways it good to finally get some answers but in other ways i dont know where to start to begin to get my head round this. I am struggling to concentrate and my moods are up and down. I have no idea what type i have or if neurologist told me as i was in shock. So i am currently awaiting a copy of her letter hoping it will enlighten me more. My neurologist was very good at explaining scans in detail and showing me them but i was a bit brain dead as felt like my brain had shut off. She has referred me to the MS specialist nurse at our local hospital to be seen in a few months, and plans to repeat MRI head and neck in March with contrast this time, then she will follow me up 4 weeks after. I have told my husband who bless him who is very supportive, ive told my mother in law but none of my own family as my mum is quite frail and doesnt need stress and my other family have their own problems. Just dont know what to do, or which way to turn!!
Aw you poor Softie.
That all sounds like a bit of a shock to the system. Sometimes people hear ‘you’ve had optic neuritis, this could turn into MS later’, but that just doesn’t really register with them. So the actual diagnosis is a real shocker.
That sort of appointment can switch your brain right off. I call it neurologistitis. You think you’re having a conversation. You think you’re understanding what’s being said, but actually your brain is shouting MULTIPLE SCLEROSIS at you and drowning out any sense. And then remembering what has been said is difficult.
Actually you’ve done really well, to know that you will be seen by an MS nurse and that you’ll have repeat MRIs with contrast.
To be honest, that later appointment with the neurologist is probably going to be when you hear what type of MS you have for definite. For what it’s worth, as you’ve had optic neuritis and it got better, that tells me you are somewhere on the relapsing remitting / secondary progressive continuum. (I’m not a doctor, but have quite a lot of years of experience!) Relapsing remitting MS means people go through periods of active inflammation which then partially or completely gets better. Progressive MS, either Primary (with no remission phases from the beginning) or Secondary has essentially a downward path, but this can be really very gentle or occasionally more rapid.
Most people (about 85%) start out with RRMS and many move on after some years to SPMS. In the absence of any other information, I’d have thought the neurologist would initially diagnose you with RR, which should mean you qualify for disease modifying drugs (DMDs) to reduce the number and severity of relapses. But some want more information first.
The next MRI with contrast will show the neurologist whether there are any new lesions, plus the contrast dye will show up any ‘enhancing’ lesions. That will indicate whether your MS is ‘active’, ie RR or progressive.
You can treat this forum as a new friend, one who doesn’t mind you blethering on about your diagnosis. We do understand, because we’ve (mostly) been there or some of the people who post on this part of the forum are going through similar things to you.
Keep talking to us, we’ll listen, and respond with anything useful we have to offer.
Sue
Thanks so much for your reply Sue, was massive reassurance to know someone out there is listening. I received a copy of the letter from my neurologist today and it says I have relapsing remitting MS. I also had another letter saying they want to repeat MRI head and spine with contrast on 16th Dec. But my neurologist said March! Spoke to imaging dept they are just as confused as me, so I’ve emailed the secretary to confirm either way. My main problem at mo is I’ve been getting short of breath easily since my diagnosis. I think it’s anxiety related very scary as never had before. To function at work (I’m a nurse which I think is worse!) I have to block it out of my mind otherwise I can’t concentrate. I feel my brain is whirling with million questions at mo. Thanks massively again for your response. Hope you are well at present
Yes, it’s hard to learn, but sharing with us will be easier
Thankyou, already I don’t feel alone on this journey.
Hello softie,
I was diagnosed with RRMS today so I’m in a similar place to you and can empathise with how you are feeling. I was utterly convinced that I had MS so I wasn’t too suprised or fazed when I was told. However the Necrologist said that based on my description of my symptoms and the combination of old and new legions that I have ‘very active’ RRMS that has got me in a bit of a flap that I may have Primary Progressive MS, something that at no point did I even consider.
I now have been given a long list of DMT’s to research and consider!!
I’m pleased you have your husband to support you, feel free to let me know how things progress as you move on, we seem to be at a similar stage and it would be interesting to see how different NHS trusts do things as it seems from reading these forums that people have wide rage of experiences from their Neologists and Hospitals.
Tim
Hello Tim, and Softie
Have a look at MS Decisions aid | MS Trust
The decision aid divides the disease modifying drugs (DMDs) into groups, of ‘Moderately’, ‘More’ And ‘Highly’ Effective. It should make life a bit easier when researching and thinking about the drugs. You could also look at the forum on https://shift.ms/ there are a lot of personal experiences written about on there. Equally, do a search on here for the specific drug you’re considering. You’ll get personal views from that search too. Just be aware, these are all subjective views.
You don’t tend to be given free choice among all the drugs, but I’d expect someone recently diagnosed with Active MS to be offered the beta interferons, Copaxone, Aubagio and/or Tecfidera. You might also be offered Gilenya or Mavenclad Softie.
Tim on the other hand, you’ll probably also be offered Gilenya, Mavenclad (aka Cladribine), Lemtrada and/or Ocrevus.
DMDs are supposed to reduce the severity and number of relapses a person has. With the increased efficacy, comes a higher risk of side effects.
But taking any DMD can give you side effects. Although you can think of the treatments as being a bit like an insurance policy. You may have few relapses without a DMD, but with a drug, you are likely to have less, and they’ll be less severe. And less relapses equals less disability progression. It’s a cost/benefit scenario.
Each neurologist is likely to prefer one drug over another. Equally, they may not be set up as a prescribing centre for all the DMDs. But if you are familiar with the groups of drugs, and the names plus the ways of taking them, you’re less likely to be utterly confused when the time comes to choose a drug. You can also talk them all over with your MS nurse.
Just be sure when you opt for drug A as opposed to drugs B and C, that you are happy with the choice. It’s your body, and your risk.
Sue
Hello Sue, Thanks for your reply and guidance. I spent all night on this website reading what you suggested. You are quiet right I have not been given a totally free choice as to what treatment I would like, rather a list of meds that they want me to read up on and learn about whilst waiting to meet my MS Nurse, the results of my blood tests and my lumbar puncher. The following are what I was told to read up on:- Alemtuzumab Cladribine Natalizumsb Teriflunomide Dimethyl fumarate Thanks again, sure we will speak again Tim
Hi Tim
I’m honestly stunned that they’ve included Teriflunomide (aka Aubagio) since it’s among the least effective of all DMDs, having on average only a 31% reduction in relapse rates. It also has some pretty bad potential side effects and the effects stay in the body for up to 2 years. Personally, I’d avoid that one.
You’d perhaps remember the facts about the various drugs if you use their trade names. A bit surprisingly, you’ve got one trade name in your list already, but all the others are their proper drug titles.
But your list would be:
Natalizumab = Tysabri
Alemtuzumab = Lemtrada
Mavenclad = Cladribine
Dimethyl fumerate = Tecfidera
Terifluromide = Aubagio
I’ve just re-ordered them according to average relapse reduction.
The equivalent of the MS Trust decision aid is this page from the MS Society https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies In some ways it’s more helpful by detailing average relapse reduction rates.
It’s a bit of a minefield nowadays with all the drug names being hurled at you with the words: ‘pick one’! But it’s a better situation than if you were diagnosed with Primary Progressive MS (no DMDs), or if you were diagnosed when my RRMS started, in 1997 (no DMDs). Even in 2002, only 4 drugs were licensed. Now they are coming fast and furious.
Best of luck.
Sue
Hi Tim
thanks for your reply, bit like you I’ve known for a while something wasn’t right but it’s trying to get someone to listen to you. I’ve had problems with my back for years and feel I just go round in circles everytime. Don’t go to doctors unless really need to. I don’t know what I thought was going on but I had convinced myself I didn’t have MS. Think because I didn’t want to believe it. But must admit it is a bit of a relief to find out finally what it is. I have got to have another MRI if my head and spine on Sunday which was bit surprising as neurologist said March. But if it helps don’t mind. For me it’s the fear of the unknown! Been a roller coaster for last few weeks had a few wobbles but now I feel ready to read things. I have informed DVLA as my MS nurse advised me to. Worrying about life insurance etc but might wait till I see her in January to discuss it. Sorry to hear yours is very active. My main worry is my right leg as sensation is different and when I walk on it for long periods numbness increases and I get intense aching of my legs sometimes. All new to this, but we will all face this together. You’re right would be good to compare experiences. Have you been referred to an MS nurse? This website is a brilliant source of support. Take care
Thankyou so much for that Sue, I will have a read.
take care
softie
Hello,
I was very briefly introduced to one of two MS Nurses at the Hospital and given their contact details. I’ve not had any contact from anyone since my diagnosis on the 4th. Although they did say I would have to wait 5-6 weeks for the results of my blood tests and appointment for the spinal tap.
Hi Tim
Hope you hear about an appointment with your MS nurse soon, mine is 14th Jan. They have brought my MRI head and cervical spine with contrast forward to tomorrow! Don’t know why, not sure if good or bad but hoping good! I have started reading info, but because it’s so different for everyone it’s really hard to work out what it means for you!
Hello Softie,
Hope your MRI went OK and you don’t have to wait too long for your results. I called my MS Nurse today to chase mt lumbar puncher. They said that they have requested an urgent one but thay will still be another 5-6 week wait and that they are almost all marked as urgent anyway!!
Just waiting until then, although they advised that at this point I should tell the DVLA and my car insurance company.
Well I had my MRI scan last Sunday, just got to await results now. No idea how long. I see MS nurse on 14th Jan, to be honest I have tried to push to back of my mind till then so could try and enjoy Christmas! as I feel it will become reality then! Hope everyone has managed to have nice Christmas, I’ve only been on here a month but feel as long as everyone has this forum they are not alone.
Hi. Just wanted to say go as I think we have a lot in common. I was diagnosed with RRMS on the 7th Dec. Still not quite sure what it’s means for my future. I’m awaiting contact from the specialist nurses. I have 2 small children and have anxiety/depression already. I just dont want anything to effect their lives. I am also a nurse and am finding hard to know how it will affect my job. Would be great to hear from people in similar situation. Hope you are all well.
Hi Inneka, I do think it’s worse sometimes when you’re a nurse as I have nursed people with MS, not many though. Like I said I see my MS nurse on 14th Jan think it will be more reality then. Like you said I don’t know what it means for me and have an impression no one can tell me as from what I’ve read so far it’s so different for everything. My impression is if you’re on Disease modifying therapy you have a better chance but not been offered to me yet. I have suffered with depression in the past and determined this is not going to get better of me. But it’s hard cos I know things haven’t been right for last year or so but since my diagnosis I just keep thinking how do I know what pains are related to MS? Tried to push out of my mind for Christmas can’t say I fully succeeded! Especially as since Monday I have had quite painful dull aching in my fingers on one hand particularly my third finger and little finger, never had before, so now thinking is it to do with MS, not getting better that’s for certain, not sure if anyone on here has experienced it too. I’m like you I’m worried sick if it will affect my work, hopefully over next few months we will get more answers. I have definitely found this forum a massive help though, no one judges you, and we are all in same boat. Keep posting, you’re not alone
I think it is particularly tough getting an MS dx when you are a nurse who has looked after people with MS. Frankly, the people with MS who need looking after by a nurse in hospital tend to be in a whole load of trouble, unlike most of the people you’ll see on here, who are often doing pretty well, all things considered, and getting on with their relatively normal lives. For what it’s worth, my friends who were most horrified by my RRMS dx, nearly 20 years ago, were nurses, and it was their own experiences on the ward that were the cause of their dismay on my behalf.
Those bad experiences are absolutely real, of course. But that does not mean that they are typical. It has not been that way for me, and with luck it will not be that way for you.
Alison
Thanks for that Alison, it’s true the people I have cared for are pretty disabled. I worked at a holiday centre for disabled people prior to becoming a nurse and saw a few people with MS there and they were wheelchair bound. It’s the fear of the Unknown I think more than anything. But I am hopeful things will be ok just still trying to get my head round it still. Take care
Hi everybody, well it’s just over 5 months now since my diagnosis of RRMS, and I’m not sure how to get my head round it. I’ve told my family now, and about half a dozen friends. Everybody says they will follow my lead which is fine but also quite stressful. My husband has been amazing, normally we can talk about anything but I don’t even know what to say to him about it. I feel quite isolated at times and I feel bad posting on here as don’t have any massive symptoms. I just have an overactive bladder, and maybe fatigue, as when I’m walking I feel I’m walking through mud. I have seen an MS nurse twice and I wouldn’t say we have a great relationship sadly. I don’t know whether this is because I am struggling to process some of it. Last time I saw her I started to open up and she cut me short and said she was very conscious my husband is waiting in waiting room so I went to get him. She asked me about counselling and if I’d had it before and why (didn’t think that was her business!) but I told her. She sent me a copy of her letter and it said to my GP I’m low in mood and reasons why I had counselling previously ( my GP didn’t know reasons!!)just felt was a breach of confidentiality. I wouldn’t say I’m low in mood. I feel anxious sometimes, I have an overactive bladder which I’m seeing a continence nurse for ( who seems to be keen for me to do intermittent self catheterisation) I’m trying other ways at mo!
My attitude at mo is to just push it to one side, most of time it’s fine, but odd days I feel overwhelmed with fear of relapses. It’s the unpredictability of MS that is the real pain. I want to stay positive. Anyone else feeling like this?