I’m hoping some of you could help. I’m a 40yr old guy, previously fit and well, married with 3 small kids and have a v stressful but rewarding job. I was diagnosed with CIS / Brainstem Syndrome at the beginning of April this year after I had an MRI, LP & loads of blood tests to investigate symptoms of sudden right sided deafness, tinnitus, hyperacusis and dizziness with numbness on the right side of my face. This is all associated with bad fatigue and symptoms are v distracting. No steroids or DMDs due to a certain pandemic so having to be patient at home. I’ve been found to have oligoclonal bands in the CSF and told I’m high risk for developing MS in the future.
Over the last 8 weeks there has been very slow improvement with some good days followed by random bad days where everything is awful. Typically I’ll get a few good hours in the morning before hitting a wall of fatigue in the early afternoon and have to go to bed. Mood is low and anxiety is high.
Is it normal for an attack to last so long? I’ve read it normally lasts weeks but I’m now well in to my 3 month.
How long does the fatigue last? I’m finding this the worst symptom as it makes me short tempered, cranky and a real pain to live with. I’d really like to feel normal again. I’d read CoQ10 supplements could help, anyone with experience of these? Any tips welcome!
I’ve been really down with the whole thing, mainly due to perceived friends lack of care and work colleagues not being in touch (despite knowing the details as above). If it wasn’t for my wife I’d have few people to talk to. Turns out I’ve fewer friends than I thought . Has anyone else noted a friend exodus or is it just me?
Thanks for reading, hopefully things improve soon. As for the long term…that’s for another post!
A CIS diagnosis is tough to live with. You must become hyper aware of your health/symptoms all the time and just worried about MS / brain stem issues / the future.
Supposing it is MS, or indeed a CIS, a relapse can take so bloody long to recover from, either partially or completely. You end up suddenly realising that you’d had X symptom and it seems to have altered or recovered. Then discover that you had been feeling better generally for a couple of weeks.
MS is so unpredictable. It’s a bugger for that.
Fatigue can be a problem that lingers, or that just pops up with a relapse. So you may find that you get over it, or that you have to learn to live with it. The chances are that with small children, you’ll have to live with it to some extent. Have a look at https://www.mstrust.org.uk/a-z/fatigue You’ll see that it’s all about fatigue management. Doing things but by bit. Again, having small children isn’t the best addition to managing your fatigue, but you need to prioritise things to ensure you are maximising your energy levels.
(I have no experience or knowledge of CoQ10 so cant help out there.)
With regard to friends and family, it does come with the territory that diagnosis of MS (or indeed many other illnesses/disorders) that you really do find out who really cares. Then again, sometimes people just don’t know what to do or say and need to be steered by what you ask of them/confide in them. As a man, Wonky, that doesn’t always come easily. (It doesn’t always for women either, but sometimes easier than for men.) Sometimes you really do have to ask for help and support. And that’s not so easy in these Covid days.
At least now you’ve found this forum, so you have a virtual support group of thousands. Not everyone posts all the time, but they tend to come back eventually. If you have questions, ask them. Either there’ll be someone else experiencing the same thing right now, or an old hand like me ready to lend a virtual ear.
Thank you so much for your reply. I’m learning so much about CIS and MS so quickly. Both CIS episodes and MS flares seem to be similarly unique in that no 2 people are identical affected. Does seem to be many common features to both though.
Fatigue is a problem. I’m just not used to feeling like this, like my whole body is trying to walk through treacle. So exhausting. Some days when I feel a bit better I tend to do a bit more but that just seems to make the following couple of days bad. For someone used to juggling home life with 3 small kids & working 10-14hour days it is very difficult to suddenly be asked to take it easy, rest, relax etc esp when there is no definite end point. If someone said that in 4weeks time you’ll feel ok I think I could deal much better. But when I was told initially that symptoms would last a few weeks and then months later I feel no better some days it is really difficult to manage.
As for friends & colleagues, it’s been a really hard time. I thought people would be better at reaching out when someone is ill. The silence is deafening from some and it makes me very angry. Guess I’m still going through the 5 stages of grief. Still miles off acceptance I think! I guess lockdown hasn’t helped people keep in touch but still disappointing as as a family trying to shield it has been a very difficult time (logistically as well as emotionally). You’re right in saying men are not great at discussing things. Thankfully I have a wonderful wife who is very understanding & I can talk to her (just hope I don’t scare her off with all my nonsense!).
That’s a tough situation, Wonky. I am sorry that life is being difficult just not. I do not think that friends/family/work colleagues necessarily know what to do with a situation like yours. If you had been dx with cancer or something (heavens forbid, but just say you had been…) then people would rally round with casseroles and cards and offers to help with the school run (well, in more normal times anyway) because there is a recognised social procedure for dealing with that sort of news. No one has heard of CIS and they wouldn’t know what to make of it if they did. So, afraid to say the wrong thing, people put off getting in touch until a tomorrow that never comes. Don’t take it more personally than you can help. Can you look at yourself in the mirror and honestly say that you mightn’t have been tempted to do the same in their shoes?
You and your wife have a lot on your plates at the moment. Things are difficult enough for many ATM, and if there were a good time to get worrying news about your health and the possibility of a life-changing diagnosis, this wouldn’t be it. But actually there never is a good time. I do feel for you as you work through some of the hopes and fears that go with the territory. Most of us on here have been there, and it isn’t funny, as my own memories of 20 years or so ago remain fresh - hence the strong fellow-feeling. All I can say is, hang on in there. Things won’t always look this chaotic. You will find your way through.
Oh, and yes, relapses can take a good while to heal as fully as they’re going to, so with luck you can look forward to things steadily getting better. With a bit of luck, they will heal completely, or almost so. And, also with a bit of luck, you will get no further trouble, and this will all fade into the distance like a bad dream. As my neurologist used to say, there is no such thing as single sclerosis (and there wasn’t in those days - CIS is a new thing!) But his point stands: a single episode isn’t MS. Let’s hope it stays that way for you…
Thanks so much for your message. It’s really reassuring to hear that others have been in a similar situation as it’s quite lonely at times at the moment. I’m hopeful that symptoms will ease enough to get me back to work, that’s my aim. I’m going to need to stay awake all day first though! Baby steps required (unfortunately I’ve not been renowned for my patience in the past, learning a new skill!).
I’m also worried about how this will affect my family and wife. Brave faces put on everywhere but I can’t help worry. We’re pretty good at talking about stuff so that helps. Guess I’m just a bag of anxiety & nerves at the mo.
Thanks again for taking the time, I appreciate it.
Sorry you are having such a tough time. Read your post and thought I must share. I was in your position 5 years ago. My attack lasted months and it took steroids to get rid of it. I have never fully recovered but have learnt to live with the damage. The last 5 years have been uneventful and my diagnosis remains CIS.
5 years ago with a small baby I felt like life was over. My friends didn’t know what to say because you can’t do much to make it better. With a bit of time you will find your way through but be kind to yourself. It’s a lot to get your head round.
Thanks for your message. I’m slowly getting head around this and (during good points) hoping for the best. My wife & kids are my life but a life that has got much harder over recent months. I’d love to go back to work and get some “normal” back in to our lives but that’s probably months away. Until then I’ll try to adopt and maintain my new lifestyle goals that I’ve picked up from various sources (incl diet, weight control, exercise, stress-reduction, meditation, Vit D, omega-3 etc). It will be hard to keep up with this but it may give me some control over what happens next. I’m open to suggestion if you have any other tips!!!
I had a lot of physio support from the Neurophysio Team as I was left with left foot drop- appreciate that is not possible at the moment. I had 2 follow up MRIs- 18 months later and 4 years later to confirm no new lesions. I have been advised to put it to the back of my mind and enjoy life.I find that easier these days but it took a few years.
What I do do is take 3 vitamin D tablets daily, as advised. I also do some pilates exercises in the morning and evening.
Wonky, I am with you on the importance of good diet, exercise, meditation, Vit D3, omega 3 oils etc.
In recent years I have been concentrating on real food (meat - best I can afford - green veg, berries. fish, eggs, full fat dairy, olive oil, nuts, seeds). I avoid sugar, starch and vegetable seed oils which automatically cuts out processed rubbish, which is composed pretty much entirely of those three ingredients. For me, being properly nourished with real, nutrient-dense food has really helped me feel as strong and well as possible. (I might add that I’ve also been on Tysabri for 10 years and Avonex for 10 before that - good food etc and good disease-modifying drugs work together for my benefit.
I hope you find a regime that works well for you. This stuff really is worth paying attention to. And if, as I hope, you recover your good health and have no further neurological trouble, those good habits will stand you in good stead anyway, and be a good example to set for your children.