Hello Everyone !
I began having several neurological symptoms in August 2020. A wide array of symptoms, nothing completely disabling but annoying none the less. After having a series of test, 3 MRIs 2 of my brain 4 months apart, and one of my spine, seeing an neurologist, neuro-opthamologist and doctors. The neurologist has found a few lesions on my brain. None that show current activity, or the that can prove the McDonald’s criteria. The diagnosis given was CIS. I have been given pregabaline to help with symptoms.
It has now been 6 months since all of this started and I am thankful to have a diagnosis however I know nothing more. I understand that this can develop into MS. What I don’t understand is how long these symptoms might last … I have itching, burning, shooting pains, pins and needles, my body and face go numb, I’m tired, I have huge brain fog, and more. All of these symptoms can last anywhere from seconds to weeks.
Lots of information is available about MS and a little on CIS, but none explains how long symptoms should last specifically. Almost everything is written by doctors not patients.
So here’s my question to everyone who is touched by either of these diagnosis. Can any of these symptoms last forever, or what is the average length? Can they go and come back? When should I worry? (As if I’m not worried all the time). How do you cope with all of the symptoms?
thank you for helping with such an awkward time
sunshine
hi sunshine
You should continue to see your GP regularly, s/he can help you to deal with symptoms and having someone to discuss them with can only be good for your mental health.
It will all go onto your medical records which your neuro will have access to (I assume).
Ask your GP for a mild anti-depressant, mine gave me citalopram to take the edge off and it is easy to get off.
Keep yourself as fit and well as possible.
Good Luck
Carole x
Hello sunshine
I don’t get the diagnosis of CIS I’m afraid. It never used to exist, but suddenly a few years ago someone came up with this label that just leaves you stranded with no decent information or means with which to plan your future.
This is the MS Trust fact sheet on CIS: https://mstrust.org.uk/a-z/clinically-isolated-syndrome-cis In many ways, I don’t really feel that even this information gives you any answers to the hundreds of questions you must have.
So I can’t answer any of your questions - I suspect that when I had my first MS episode, it would have been described as a CIS but that term didn’t exist then (24 years ago). That ‘relapse’ lasted several months following steroid treatment. The trouble was that I was told at the time ‘it’s not MS’. Which meant that I just thought I was a medical mystery and ignored the relapses I had over the next few years until a disabling relapse came along and I couldn’t ignore it anymore.
Are you still under the care of a neurologist? Ie do you have a follow up appointment? And do you have an MS nurse you could call upon for help and advice? If not, you could get the contact details for one by phoning your neurologists secretary and ask for them.
Were you offered a disease modifying drug (DMD)? There are DMDs suitable for a CIS diagnosis and taking one could delay or even prevent conversion to MS (assuming that might happen). Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for information about which DMDs might be available to you.
The only other thing I can say is to continue talking to us on here. Hopefully someone else who’s been given a CIS diagnosis will answer your post. It would be helpful to you if there were views from people who’ve had CIS remain as a one off as well as people who’ve progressed to MS.
Best of luck
Sue
Totally agree with Sue here…i was given a diagnosis of CIS 5 years ago. The way the nuero explained it to me was that it could have been anything. A medical phenomonen. I was happy at the time and totally forgot it ever even happened once my symptoms subsided 12 months later (maybe this was my nuero’s intention, giving him the benefit of the doubt). Wind the clock forward 5 years and i feel like there was an opportunity missed to treat the disease prior to a second event, which satisfies the ‘space and time’ criteria for an MS diagnosis. I really hope that yours is genuinely a clinically isolated incident and you sound more informed than i was at the time but with the benefit of hindsight, i would tell myself of 5 years ago to at least seek a second opinion from a well regarded MS nuerologist and ask the question of treatment options. There are some drugs that have good data on preventing conversion to MS. Of course, that may never happen anyway but it is worth exploring in my book. Good luck