Hoping some of you lovely people can help me out with my confusion about symptoms.
I have seen a neurologist and had an MRI, which showed a prominent lesion near my cerebellum. The neurologist has diagnosed clinically isolated syndrome, as there isn’t evidence that I’ve had more than one attack over time. I’ll be back to see him towards the end of June to discuss the scan results, and he has also ordered blood tests and an LP and another scan in 6 months to see if there are any changes.
The reason for my post is that I seem to have developed a new symptom within the last 3 weeks, which wasn’t there at initial onset.
3 months ago I had a bad fall, balance problems, double vision, numbness in my left cheek and tongue and cold tingles on my right ankle. These symptoms have been very slowly improving, although almost all of them all still there.
About 3 weeks ago I noticed that I had a loss of sensation on the top of my left foot and going up the front of my ankle. There are muscle twitches in my lower leg and foot too, making it difficult to sleep at night.
My understanding of CIS was a one off attack/event, so I’m confused why I have a new symptom that wasn’t there at the beginning. Should I contact the neurologist about it? Or should I just leave it until my appointment in June and discuss it with him then? I know there’s probably nothing he can do at this point anyway as he has ordered all the tests, it’s just a case of waiting for them now.
Sorry for the long post. It’s been very distressing because even though progress has been slow, I am better than what I was even a month ago, then this new thing has appeared. Worried what else will happen now, which isn’t helping with the anxiety and sleep problems
Thank you for reading x
CIS is a one off event. It doesn’t mean that the one event will never be repeated, or that you won’t ultimately be diagnosed with MS after further relapses and lesions on the CNS as seen on MRI. It’s more of a ‘watch and wait’ diagnosis, to see if it becomes MS or not.
So new symptoms do, unfortunately, seem to indicate that your diagnosis may alter.
Why not give your neurologists secretary a ring and discuss with him/her what’s to be done. You could ask if an email detailing exactly what seems to be happening could be set to him/her and forwarded to the neurologist.
Or speak to your MS nurse if you have one. See what s/he thinks.
I imagine that your next MRI and other tests may be moved up to happen sooner rather than later. If you are to have your diagnosis changed, the doctor will need a further MRI to demonstrate dissemination in time and space. And this is done by MRI.
If you are diagnosed with MS, then at least you’d be eligible for disease modifying drugs (DMDs) so further relapses may not happen.
With regard to your initial symptoms, I’m afraid that recovery from attacks on your myelin, ie relapses, can take weeks or months to get better. The process of remission is so slow it often feels like you’ll never get better, but slowly things do improve.
Best of luck.
Many thanks Sue for your helpful response. I do have an email address for the neurologist so I think perhaps it would be best to send him an update on the new symptom.
I had of course hoped (as everyone does) that the one attack has happened and won’t be repeated. Which is why I’m now concerned that other new things are happening.
I agree the progress is very slow indeed, and as I’ve no experience of this happening before you do start to wonder if that’s normal. Thank you for your reassurance.