CIS or Possible MS

[hollow]

Hey everyone,

I wanted to share what has been going on with me and possibly get some opinions from people on here.

A month ago, the left side of my face and scalp area went numb. It was just the cheekbone area at first and within 48 hours it was the whole left facial side and scalp. I thought at first it was probably my TMJ acting up so I visited the dentist, and he was like yeah it is probably your TMJ causing you some numbness. He referred me to an ENT specialist. The following day, I felt half my tongue had went numb as well and felt very odd so I decided to go to the ER. They checked me and immediately wanted to rule out stroke and a possible aneurysm. The on-call neurologist suspected MS and admitted me so I could get a brain MRI done asap.

The following morning, my brain MRI showed one bright active lesion in the brainstem. The neurologist ordered a spine MRI, and a lumbar puncture to rule out possible infections and check for oligoclonal bands in my CSF.

My spine MRI was clear, and my CSF came back negative. So the only thing they found was one brainstem lesion. I was given a dose of 5000mg of IV Methylprednisolone over a course of 5 days. I got horrible heartburn, fatigue, muscle weakness, and slight depression. After coming back home for a few days, I got acute gastritis, I couldn’t even keep fluids down, and had to be hospitalised again. Gastritis was probably from the steroids damaging my stomach lining.

As of now, I’ve been home for around 2 weeks now, I have a follow up MRI in about 1.5 months. My neurologist at this point said I might just have CIS (clinically isolated syndrome), because she does not see any other sign of MS to diagnose me yet.

I’m personally very confused because I’m just mentally waiting for a second attack to confirm MS. I have a bad feeling I do have MS, been googling lots of MS related statistics as well. All of them state that if you have CIS, and a brain lesion is present, you’re basically at a 60-80% chance of developing the disease. That scares me, A LOT. I’m just 27 years old so thinking about the future scares the hell out of me.

Everything happening soo suddenly just flips your life upside down.

TLDR: CIS case with one brainstem lesion, scared I’ll be diagnosed with MS soon.

[catwomanCarole58]

hi hollow

it feels wrong to write what i think but that’s the whole point of your post.

here goes -

you have been told that you have CIS (a single episode of ms).

that is scary.

best case scenario is that you won’t have another - worse case is that you will.

a full diagnosis whilst being a pain in the arse is not the end of the world.

take it one step at a time, get your head around each step as you go.

you have youth on your side.

you have an amazing array of treatments available.

it is very survivable and you can have a good life.

give yourself every chance by keeping healthy - eat well and exercise.

your gp ought to be your best ally.

talk to him or her.

make plans as someone your age should.

the only person who can stop you is yourself.

get out there and do it!

sending you waves of love and strength.

[hollow]

Thank you for all those encouraging words catwomanCarole. Part of me wants to just move on and calm down, but it’s harder than I thought. The feeling of “my life is over before it began” is eating up my mind. People my age are doing normal things like getting married, travelling, having kids, continuing their education etc, and I can’t help but feel left out all of a sudden. It’s like all of a sudden I can’t relate, and I can’t even share these medical issues with most people, not even friends. My family has been very supportive but they think I’m handling it fairly well since I’m not broken down crying all the time.

I’ll try to keep positive as much as I can. Any advice on how to cope with the “Limbo”?

Thanks

[SarahB1375]

Hi Hollow,

We’re in a similar situation at the moment so I thought I’d reply to let you know that I know how you’re feeling, and also to offer a little bit of advice from my own experience

I’ve recently had an MRI that showed no lesions on my brain, but showed an inflammation in my spinal cord which is what’s causing my MS-like symptoms, and they’re not sure what’s caused the inflammation as they couldn’t find an infection. My neurologist had diagnosed me with CIS and said that previously the way to diagnose MS was to wait for further episodes of symptoms or for evidence of lesions formed at different times - however, the diagnostic guidance was updated last year and now neurologists can refer people for extra tests that can form a better picture of whether CIS will/is likely to develop into MS. He’s referred me for a lumber puncture and VEP (test on my optic nerve) as these can indicate an increased likelihood of MS. Frustratingly it all seems to be based on likelihood as there isn’t a definitive method of diagnosis!

From what my neurologist said and from what I’ve gathered from reading up on the topic, if the tests show a strong likelihood of it developing into MS they will start me on disease modifying drugs to hopefully delay the onset of further episodes and reduce the severity of them when they occur.

I have no expertise whatsoever and there’s a lot I don’t understand about CIS and MS but it sounds like because you only have one lesion and because your lumbar puncture came back clear, there’s no evidence currently to suggest you’re at high risk of converting to MS - but it’s really good that they want to re-scan you in case further lesions have developed because the evidence seems to show that the earlier you can be diagnosed and started on medication, the less impact MS should have in the longrun

I have no idea what my test results will show but I’m preparing myself for a diagnosis of MS just in case, and although the symptoms I’m experiencing at the moment are annoying because they’re slowing me down, I’m really grateful that all avenues are being explored ASAP because it gives me the best possible chance of tackling MS head on and slowing it down, which is the same for you. I’ve also been reading other people’s experiences and speaking to a colleague with MS, and they all seem to say the same thing - that it’s a pain to have but it doesn’t define them and with support they’re coping and getting the most out of life regardless of their body trying to slow them down a bit!

Let us know how your next MRI goes and keep accessing support - there are a lot of people who know how you’re feeling and can help you cope with it

Sarah

[SarahB1375]

I meant to say as well - have you tried talking to your friends about what you’re going through? You might be surprised by how supportive they’ll be, and if they know what you’re going through they can make sure they keep including you in plans but can also make reasonable adjustments based on your symptoms. It’s fantastic that your family are so supportive, so let them know how you’re feeling so they can help you even more when you’re struggling There’s no reason to think you can’t do all the things your friends are doing and all the things you assumed you’d be able to do - you might have to do them slightly differently but if you put your mind to it you can do whatever you want!

[catwomanCarole58]

i agree with sarah

friends are mostly excellent and you can always drop the one who aren’t.

keep at it, do the stuff that you had planned to do.

ms came along and picked a fight with you.

get out there and give it a good kicking!

[hollow]

Thank you soo much for the positive replies, just reading these helped me calm down loads. Knowing that someone understands how hard this is mentally lifts a huge weight off my chest. I guess time heals all wounds and time heals all anxiety (I hope) lol I wanted to update and also ask about my situation at the moment. So I’ve been having weird symptoms everyday since my discharge but they don’t seem to last more than 24 hours, so I ignored them. Before yesterday though, I woke up with a heavy feeling in my entire left arm, and tingling fingers. I waited two days to go get it checked. After checking, my neurologist said there’s no absolute need for an MRI, but if you are curious or worried we can perform one and see what’s going on, otherwise you wait for your appointment after a month. She did an entire reflex test on me and said this could and couldn’t be a second attack of some sort, but impossible to tell without an MRI. She sees no urgency but said if you want it can be done. Now my issue is, if I do one now, I can’t do one a month after. There’s also a chance that if I do it now then the lesion (if there is one) can be very small or in development that it might not show up on an MRI. There’s also a chance that there might be more silent lesions giving mild symptoms, and I’d benefit from an MRI now and start disease modifying therapies. Any suggestions as to whether I should keep my MRI a month from now, or get it checked within this week? The doctor left this decision on me and I’m unable to decide.

[Not_quite_supermum]

Hey,

I too currently have a CIS diagnosis. I would be inclined to wait the month.

I’ve had multiple symptoms since my initial event in October last year. I’ve had 3 MRI’s in that time period and two yielded no change. I’m still awaiting the results of the last MRI.

The thing is, symptoms following an event don’t necessarily equate to new patches of inflammation. As my neurologist put it, “your central nervous system has been under attack and is still excited”.

The amount of stress that comes with taking MRI’s, chasing results and arranging follow ups, is just too much (for me). In hindsight, I probably would have preferred a annual or 6 monthly MRI.

I too have a high probability of converting to MS, I have lesions in my brain and spine and have had 2 relapses, although only one was confirmed. The neurologist has pretty much told me I will have a diagnosis of MS in the near future.

It’s a weird and crappy place to be, either feeling ill, with no known cause, or not ill anymore, but expecting to be ill again. And, waiting to be labelled with a disease that you might never have.

If it sounds like I’ve made peace with it, I haven’t. I occasionally have Zen moments when all is good. Right now is one of those.

But really, if it’s MS, it’s MS and it won’t stay hidden for ever. We’re lucky as we are under the care of a neurologist who hopefully will spot the conversion of CIS to MS if it happens.

[SarahB1375]

Hi Hollow,

I’m glad that being on this forum and speaking to people who know what you’re going through is helping

Re. your question - I agree with Not Quite Supermum. I too have had a range of symptoms that have come and gone since the start of this “attack”, and they’re classed as all being part of the same episode - I was worried that changing symptoms were evidence of multiple attacks, but my neurologist wasn’t at all surprised by the changes I’ve experienced and says they’re all linked.

Being able to start disease modifying drugs sooner rather than later is obviously a key motivator for wanting a diagnosis ASAP, but I think it’d be worth holding off until your pre-booked MRI so that if the symptoms are part of a second attack there’s more chance of lesions showing on the scan. It’s completely down to you as there’s no right or wrong decision, but if it were me I’d wait and hope that if it’s a second attack it would have had time to show on the scan.

Don’t forget that there’s every chance this isn’t a second attack and you’re not converting to MS

Sarah

[Ssssue]

Hello Hollow

While it might feel to you that this has been going on for ages, in reality it’s only a matter of weeks since your first symptom.

It is entirely likely that your initial flare or relapse with the addition of stress caused by the worry about MS has caused your more recent symptoms. So it could all be part of the same event.

Waiting another month or so isn’t going to change things very much. And once you have the MRI, you might still have no answers. Unfortunately, many people have to learn to live with a CIS diagnosis for quite some time. So don’t expect that whenever you have the MRI you will automatically get a diagnosis. It’s just as likely that you won’t.

Try to relax with the CIS diagnosis for a few weeks longer. Don’t forget that 80 to 95% of people with MS have Oligoclonal bands in their CSF (and the tests are getting better all the time so it might be an even higher percentage than this). You don’t. It’s entirely possible, even probable, that you don’t have MS.

But, as Carole says, having MS isn’t the end of the world. There are very good disease modifying drugs these days that ward off relapses and help people or remain disability free.

In your position, I would wait for the next month and a half. Have the MRI then. It’s not going to affect you greatly even if it does give you a confirmed MS diagnosis. Yes, there could be a few weeks difference in starting treatment, but ultimately a few weeks probably isn’t going to make a significant difference.

Obviously if in the meantime, you do suffer a really bad relapse, one that for eg really badly affects your mobility (by which I mean you are unable to walk), then go to A&E. Then you can get an urgent MRI.

All the best.

Sue

[sue1]

Hi Hollow, oh wow !! You are describing me over 3 years ago, same symptoms, same test results and same fear . Now over 3 years later no real major symptoms a bit of burning a bit of numb patches but plodding along just fine…Who knows if this one episode will go any further but now i am very much doubting it ( thank god ) please dont get consumed like i did i w Wasted a good 2 years on what iffs, feel free to message me whenever you or ever you want x

[hollow]

It’s really kind of you to go through what you currently are and yet take the time to help others and reach out. You’re spot on with how it feels to be dangling in between illness and no illness symptoms. I was told when I was discharged to keep an eye on any new symptoms and not to ignore them thinking it’ll go away on its own. That in itself caused me a lot of panic and anxiety. There’s only soo many times you can go to the hospital freaking out lol.

During this last week, my left eye starting to act up too and had horrible pain when I moved my eyeball along with a constant migraine. So my neuro decided to go ahead with the MRI since I have two symptoms. Although she wasn’t concerned about the arm since she won’t treat it, the eye led her to think it might be optic neuritis. Awaiting results now, and if there is something new in there, then I’ll have an answer, if not, back to limbo.

If you don’t mind sharing, did the results of your last MRI come in?

[Not_quite_supermum]

Thanks for the kind words, like I said it was a zen moment, right now I’m freaking out…

So ironically, I got my results back this morning. It states that the scan essentially remains the same but it “appears” that I might have a new patch of inflammation on the left side of my brain. Unfortunately, the scan was not clear, so I’m not sure what that means. I don’t think there could be a more ambiguous MRI report?!?.

The neurologist has asked me to come in to discuss, I not sure what to expect, although my husband and I suspect he will keep me in the watch and wait category.

My neurologist is also very conservative and won’t start DMT’s until I have a confirmed diagnosis. So I think that’s why I’m freaking out a bit.

i really hope it works out better for you. I see the neurologist on the 31st so I’ll keep you updated. Please do the same if you feel up to it.

xx

[julesgazz]

Sue1 and hollow, thanks for yr posts, have helped me with my limbo land. Almost same as you hollow, admitted to hosp, had iv steroids, v sick when got home for a week…steroids are horrible but helped. At least we skipped waiting see neuro by dr referral, saved 2/3 month wait! Yes, waiting seems be the hardest but i take what you said Sue1…If you are still in limbo after 3 years then i need to get on with my life, i cant be forever focussing on what i dont yet know, and maybe never will…even tho my walking has changed and i have loads symptoms, i have optic dysfunction and positive o bands, but no diagnosis yet…otherwise I’m just going keep focussing on ‘not knowing’ and that will drive me more potty than i already am. Hang in there willow, I’m hanging there too, but maybe i need get out more and keep distracted from medical stuff until the time comes. One day at a time and plan some good things to look forward to. All best to you both Jules

[hollow]

If you don’t mind me asking, why wasn’t the scan not clear? Maybe you should get a second opinion or another MRI to know what’s going on? Personally I think a conservation medical approach is better than a drug-happy approach. I hope everything works out and this new thing is nothing serious. Hang in there, and ofcourse you can DM me or post here whenever you feel like. I’ll keep you in my prayers.

My own case, I was told to get the MRI done since I had left eye pain as well as tingling in my fingers on my left hand. My neuro was concerned about the eye pain thinking it could be optic neuritis, so she ordered an urgent MRI. Thank god it was all clear, no new lesions on the brain or spine, although there is apparently a bulging disc in my upper spine. Neuro thinks it might be causing the tingling in my fingers since it’s bulging towards the left and possibly pinching a nerve. Sounds weird but I think my sneezing attacks from two years ago might be the reason this happened. They were very intense and one of the sneezes had a horrible pain affect after, like cry on the spot level pain. I knew something went wrong at that point, but never got it checked, always blamed my mattress and sleeping positions lol

I think the hardest thing right now is the fact that my parents are aging, particularly my father, and he’s in and out of hospitals every month at this point, it’s horribly stressful. I constantly feel guilty for not being able to do much. The rest of the family is quite stressed as well, because my older sister suffers from Lupus, and I’m on hold for an MS diagnosis. 4 out of 6 people are ill in the house.

Also these days, I don’t know if this is normal, but I’m getting very agitated whenever anyone in the family asks me to update them about how I feel. Stuff like “How’s your arm now?” or “Did that ear pain you have go away or is it the same?”, I’m asked this on a daily basis by at least two people in the house. I get annoyed and tell them to stop asking me, that I’ll update them incase something gets worse or better, because all asking me does is remind me that I’m feeling pain. I don’t know if this is the right reaction, but my family members get offended when I tell them not to ask. Normally I’m the one who has to adjust to everyone’s emotional status and take care of what I do or say in order to not piss them off or ruin their day. But I just can’t seem to do that anymore with soo many of my own problems to deal with, specially emotional and mental ones.

[SarahB1375]

I’d say your response to being constantly asked how you are is normal - I’m sure it’s from a place of concern but being checked in on constantly can be exhausting and frustrating at the best of times, but especially when you are dealing with symptoms that are unlikely to just disappear overnight. Perhaps when things are calmer you could gently remind your family that what you’re experiencing is stressful and upsetting, and that your symptoms are here to stay for the foreseeable future and let them know what type of support you’d appreciate instead. It may be that with everyone else’s health in decline they’re in denial about you having health issues because they just don’t want it to be true/can’t cope with it. My mum and my manager were both the same - they didn’t want to entertain the possibility of me having something serious so they tried to trivialise my symptoms and suggest it was down to a vitamin deficiency or that I was causing the symptoms myself. That was quite frustrating and also upsetting to deal with, but all I could do was understand that they were struggling too and felt even less in control that I did, and in time they stopped acting like that and just asked what they could do to help and support me. I’m sorry that your home life is causing you so much stress - that’s not nice at any time, but especially when you’re in a situation where stress can exacerbate symptoms. Please don’t feel guilty for not being able to help with your father - it’s not through choice, it’s because you’re coping with something that’s having a massive impact and unfortunately preventing you from doing some of the things you used to do/would like to do. You’re not responsible for the changes you’ve had to make, so don’t beat yourself up about them

[hollow]

[quote=“SarahB1375”] My mum and my manager were both the same - they didn’t want to entertain the possibility of me having something serious so they tried to trivialise my symptoms and suggest it was down to a vitamin deficiency or that I was causing the symptoms myself. [/quote]

This is really frustrating, and I commend you for having the mental patience to deal with that, I get very angry for hours. My mom has been trying to blame everything on iron deficiency, and vitamin D. She borderline blames me for not taking care of my vitamins. It makes it sound like I enjoy feeling sick. It’s very annoying. And my other family members are paranoid and basically push their anxiety on me by asking me a million questions, and expecting me to just list out all my symptoms, then get mad if I tell them I’m not sure what’s going on yet.

Lately, I’ve also been soo dead tired, couldn’t get out of bed, couldn’t shower, just felt like my body doubled in weight and my muscles gave up. I felt sick right after my dad announced he’s going to the hospital again, so I know now that it’s definitely stress related. Does anyone have any tips to battle fatigue?

[SarahB1375]

Thanks - I’m quite lucky that I generally have the patience of a saint, but that’s been tested a lot recently!! It’s a difficult time and your emotions will be heightened while you deal with this. Do you have the option to spend more time away from the house in calm settings (e.g. at a beauty spot, in a library etc) to help you have space and some quiet time to gather your thoughts and have some respite from your family? It might be worth calling the MS Helpline and asking them if they’d be happy to have a quick chat with your family to answer any questions they might have and to validate everything you’ve been saying - it’ll give you a break from the questioning and it hopefully will help your family understand that you’re not the cause of your symptoms. Fatigue wise - other than trying to avoid stressful situations and going to calm places, I can only give you the very vague advice that my neurologist gave me: “pace yourself”. It’s not a lot to go on (it’s irritatingly vague!) but it’s been working for me - I listen to my body a lot more and have come to terms with the fact that I can’t just carry on regardless like I used to before I got ill, so now if I’m struggling I sleep more, rest a lot more, only do essential things and ask for help more. I had a couple of really nasty bouts of fatigue that have reduced to just persistent tiredness since I started taking things a lot easier and allowing myself time to recover and heal. Perhaps if you do ring the MS helpline they can give you more advice on how to cope with it

[hollow]

Hey Everyone!

Didn’t know I would be updating soo soon on my situation, but two days ago I was informed my last brain MRI showed 2 new inactive lesions. My neurologist thinks my second attack might’ve been sometime during March, 6 months after the first. Since the total lesions now come to 3, I’m now confirmed for MS and neuro has suggested to look into DMDs. My neuro wasn’t expecting new lesions since I had no oligoconal bands in my CSF, and having MS with a negative CSF was very rare. Even though I was very aware that I might have MS in the future, it was still very tough to stomach my diagnosis.

I had no major symptoms that indicated new lesions. The only thing that did happen was that my thyroid started acting up two months ago and I knew something was wrong. I felt like I spent most of my days fatigued, lots of gastric issues, and had full on depression, but nothing out of the ordinary for me.

I cannot stand the idea of taking medicines life long, I’m dreading taking DMD’s since I’ve read how they make people really sick and miserable. Not to mention that all of them have risks and there are no long term statistics as to what happens to patients who take them for a long time. As soon as I heard that I have no option BUT to take the DMDs, my heart sank. I felt like I was being pushed off a cliff, helpless. But then again, googling drug reviews is not the best idea.

I was hoping I could find opinions on here to know what medication has the least amount of side effects. I’m normally very sensitive to most medications. Also, I was looking for recommendations for the best hospitals to get a second opinion on this in the U.S.

Thanks!

[SarahB1375]

Sorry to hear you’ve received a diagnosis, although in time it may feel like a relief to know something more concrete and be able to deal with it head on. I may be wrong, but I was under the impression that DMDs are available and advised/recommended but not compulsory? It may be that the person you’ve spoken to has assumed you’ll definitely want them so is speaking as though they’re mandatory without checking how you want to proceed? It’d be worth discussing this further to find out why they want you to start them now, and what they think will happen if you don’t. I’m still awaiting a diagnosis but my neurologist said he wasn’t concerned about not being able to prescribe DMDs yet because my symptoms are comparatively mild so the side effects of DMDs would outweigh the benefits at this point. Maybe it’s worth taking into account your current symptoms and the impact of your MS, and then weighing that up against potential side effects and potential benefits of the medication. For example, if something would affect you in the short term but may delay further onset of symptoms longterm it may be worth it. Hopefully someone with more knowledge and experience can offer their wisdom to assist you further Sarah