I’ve recently been diagnosed with clinically isolated syndrome after suffering from optic neuritis and an MRI (showing precious lesions) and a lumbapunture showing oligloconal bands.
Until all of this I wasn’t really aware of other symptoms I may have experienced… I’m a first time mum to a 9 month old so many just seemed to be thise relevent to be a tired new mother!
I’m struggling with understanding how new episodes present themselves. Since yesterday I have been experiencing a range of symptoms but not an isolated one for a prolonged amount of time. I’ve had back pain, muscle spasms in my leg, loss of strength/numbness in my hands and loss of balance. But just a mixture of all of the above at periods throughout the day and nothing too sustained. Would this be something that others experience and can be considered an episode?
Thanks for your advice!
Just like you I was diagnosed with CIS in 2014. I had spinal lesions 1 brain lesion and a positive lumber puncture.
I have also suffered with similar symptoms to you since my diagnosis but didn’t fit the McDonald criteria for a MS diagnosis.
I finally got diagnosed in October 21 after another lesion was found on my spine in a different place.
You have to fit the McDonald criteria for space and time to get a diagnosis which is very frustrating.
I myself knew I had MS but getting a diagnosis was a nightmare, Some consultants have a better understanding than others.
Keep a diary of your symptoms for the consultant who will probably want you to have regular MRI scans every 6 months.
Thanks for taking the time to reply to me. Gosh that was a long wait for a confirmed diagnosis! Out if interest are you now on medication and have you seen any improvements? Nobody had ever discussed treatment options with me so I feel a bit in limbo which sounds like it is pretty common in most peoples experience.
My MRI only showed brain lesions and none in the spine but the neurologist did say he was bringing my MRI forward to the summer after thr lumbapuncture results as it was scheduled for December.
I also noticed that nearly all these symptoms are in my left side which is the side I also had the optic neuritis so it just seems a bit to much to be a coincidence. Im keeping a diary for when I next get to see the nuerolgist…whenever that may be . Thanks again
No I am not on any treatment, I have just had another MRI last week to see if anything has change.
Most of my symptoms are on the left side but I have a lot of trouble with my legs and mobility.
I was diagnosed over the telephone so haven’t seen my neurologist for 2 years.
I was told in 2014 that if you have been diagnosed with CIS with lesions and a positive lumber puncture you have a very high change of developing MS in the next few years.
My symptoms consisted of numbness pins and needles loss of motor function in left arm electric shocks & weakness in my legs. Most symptoms did improve for a time after steroid treatment but are always there to some degree and far worse in the hot weather.
I have got used to them now after 7 years and
to be honest If I can manage without any treatment l will.
I have just turned 50 but think I really started experiencing symptoms when I was 37/38.
Hope you go on ok.