I am struggling a lot just now, as I am an anxious person at the best of times. I had optic neuritis in one eye in 1986 but recovered from it with steroids and was fine with no symptoms until late 2021/22 (36 years later). In 2021 I started noticing feeling stiff and my balance felt off. In late '23 I took tingling down my right leg and ever since then have had altered sensation on the sole of my right foot and trouble walking. They have found a lesion at my cervical spine and am going for another brain mri tomorrow. My first brain mri showed white spots which did not look like ms lesions. I was also offered a lumbar puncture but declined it for now but have said I will have one if it is absolutely necessary at a later date. I have a few other dymtoms which could be neurological too and severe fatigue.
I am terrified. Has anyone any advice for me on how to keep going through this very stressful time for me. Thdnk you.
Really sorry to hear you are having a stressful time and that you have been having symptoms for so long. Really hope you can get the help you need soon!
I’m also currently going through the process of scans and tests so know you are not alone!
I had a lumbar puncture earlier this year - i am scared of needles and actually cried when the neurologist said it was needed BUT the actual test itself went well for me. I told them I was scared and the doctor who did it asked if i’d like him to talk about what was happening throughout which I did and that helped. They also let me have someone i know stay with me whilst they did it which I found helpful but I don’t know how standard that is.
I hope your MRI tomorrow goes well and that the results arrive quickly!
No need to be terrified. You’ve lived with versions of this for 36 years. You of all people should recognise this disease is a slow-burner. And a diagnosis is only a label. Try to stop spiralling - you’ll be fine!
Graeme
In all likelihood, your own terror is contributing to fatigue.
Thanks for the reassurance re lumbar puncture. I think hearing the word puncture freaked me out.i will go for it if it is suggested again. I guess it will depend on results of mri tmrw.
