Hi lovely people - I went to my 2nd opinion neurologist today and she thinks my symptoms might indicate a lesion in the spine. I’m going to have an EMG, cervical spine MRI and brain MRI.
She said I might have propriospinal myoclonus but she doesn’t think MS because in MS myoclonic jerks increase and increase, slowly getting worse and worse but never getting better so I wouldn’t have intermittent times when I have lots (which coincide with when I’m most fatigued etc) and times when I have few (when I’m most well). Is that right from your experiences?
Thanks in advance,
Deb x
Hi Deb
I have MS and spinal lesions. Last year I started to get myoclonic jerks mainly in my arm / leg and was put on medicine to help reduce them. After a few months I weaned off the medicine and they did not return until the last few months. They were twice as bad so started the meds again and this time it didnt work as quick at stopping them but now they have stopped after about a month on the meds. Im frightened to stop taking the medicine in case it comes back. So in answer to your question Im not sure if they are getting worse because I take medicine to help stop them but they did go away for several months when I had stopped the medicine. Maybe someone else can answer. good luck with all your tests heather
Thanks Heather - as you say, it’s difficult to know what your experience means. I know lots of people on here have had or do have jerks so hopefully they will see this.
I don’t think propriospinal myoclonus is usual in MS but I also don’t think this type of myoclonus explains the other neurological symptoms I have. Any ideas anyone?
Hi,
I used to get what I called a judder when I used to wake up in a morning. my right leg would kick for no reason. I no longer get them and miss them lol. I think it would be a similar thing but my neurologist didnt bother naming my judder. I don’t think they are a serious thing just a sign of a problem where the nerve is damaged and faulty
Best wishes