Hi there, Am feeling a bit lost and hoping for some words of wisdom from you lovely people. I had my first MRI in November 2017 after l’hermittes (in June 2017) and the second MRI some weeks ago. The first showed multiple spots of inflammation on the brain and I was given a diagnosis of CIS with a high chance of converting to MS. I’m massively relieved that this last MRI (with contrast) showed no active inflammation and no changes. The confusion/sense of feeling lost comes from knowing that this means remaining in limbo for longer. Fatigue and muscle weakness etc has generally felt worse over time (but maybe that’s a hot summer, and focusing on symptoms?). I’ve been told the next step is a lumbar puncture (I’m really not keen on this) and that I could potentially take DMD offered to those with a CIS diagnosis. Does anyone have any experience with these, or any words of wisdom on the lumbar puncture? Is it worth the side effects of drugs and taking the risks of a lumbar puncture if the ‘progression’ of inflammation is very slow or non existent? I guess the MRI doesn’t show up all and every miniscule change… Would be so grateful for any insights
Very good news about the lack of further inflammation on MRI. And to have a diagnosis of CIS is good. The lumbar puncture is not strictly speaking necessary, but many neurologists like to do one, it just ticks another box.
If you follow the generally accepted guidelines for the LP, hopefully all will be fine. These guidelines are to drink lots of full strength coke during and after the LP, and to stay laying down flat for at least a couple of hours. Take a bendy straw with you so you can carry on drinking the coke. The caffeine and sugar are important. You should avoid the ‘headache from hell’ by doing this. Saying that, a few people get the headache any way. And some don’t follow these instructions and still don’t get the headache!!
With regard to DMDs for CIS. I’m a believer in them. You could still convert to MS and the DMDs are a bit of an insurance policy to cover you for a Big Bang relapse. What’s been allowed for CIS is the beta interferons and Copaxone. I took Copaxone for 5 years, and while it’s a pain having to self inject, I had no side effects at all. So for me, that would be the one I’d choose. The interferons tend to have mild flu type side effects, but lots of people take them for years and don’t continue to have side effects.
Have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis for more information.
Best of luck with your decision.
Had a lumbar puncture last week - a lot easier than a filling and very quick - no after effects.
I’m so glad that it was quick and with no effects afterwards - puts my mind at ease a bit! Thank you
Thanks so much for your reply - it’s really helpful to hear your experience of Copaxone and the tips on the lumbar puncture. I’ve had quite mixed messages from the neurologists about how much a LP is really necessary and whether it would lead to quicker diagnosis. I’m getting the impression that’s shifted since the McDonald’s criteria changed in late 2017 - it now seems to carry more weight again?
I have another neurology appointment in a few weeks’ time and will have a chance to discuss whether/which DMDs. I’m looking back over notes and info the neurologist gave last time, and it sounds like Copaxone isn’t available for CIS - it looks to be just the interferons: Avonex; Betaferon; Extavia and Rebif. Bit scared of some of the side effects listed- depression, decrease in white bloods cells and hair loss don’t seem like fun…but then nor does a Big Bang relapse… time to do some reading on it all!
Copaxone is available for CIS. Have a look at the ‘plain English’ version of this NHS/NICE evaluation: https://www.journalslibrary.nihr.ac.uk/hta/hta21520/#/plain-english-summary
It says that Glatiramer Acetate (ie Copaxone) is actually the most cost effective treatment for CIS. (And it’s recent info - September 2017.)
Hi achrida, Don’t get stressed about the LP if you need it Everybody told me how bad it was and the pain oh my, I drove myself there and back, I let the junior doctor have a few goes, that didn’t work so the more experienced doctor then did it. They numb the area first so you can’t feel pain just a bit of discomfort. I’d have it again without a problem, if you think it will hurt it probably will, I know everyone is different but keep positive
Thanks so much Sue - yup, that’s more recent than the MS Trust booklet I was given (that was May 2017). I’ll print off the abstract and citation for that article and bring it along to my appointment!
By no means I want to stress you out or scare you, and while I am sure most people have an ok experience with LP, if I were you I would think ahead and plan for the worst. Again, I am only saying this as I have been reassured it will be all totally fine and that I will be able to go back to work the next day. Well… if only I had known about the complications that may happen I would have saved myself a lot of stress.
From the start things went terribly bad - they had to do it three times and couldn’t get to the liquid. The fact is that you don’t feel the big needle going in as you are numb but if they go through your nerves you will feel electric shock sensations. I was screaming and from pain.
I was left with a massive leak of CFS and samples were full of blood.
Went home and the next day was rushed with ambulance as vomiting and with the worst headache I have ever imagined.
I have spent a week in hospital, ling 24h flat in bed, vomiting every day and on oxycodone drips, plugged to machines.
I missed a whole week of work and after I was back home I had to take another week off to recover and be able to walk etc.
If only someone had warned me that this scenario could happed I would have made arrangements and did not have to endure all of the stress.
Again, I hope your procedure will go fine, I suppose I was unlucky, but the point is that they should warm the patients of possible serious side effects so as we can be preparred.
Best of luck for your LP.