Hello. First post here although I’ve been lurking for a while! I’ll try and keep this short as my thoughts are all over the place.
This episode started with a dull headache on the top of my head that wouldn’t go away following a flu-type bug in March. As well as the headache I was experiencing an extreme fatigue, some intermittent pins and needles and clumsiness and balance problems. The GP I saw referred me to neurologist and I got an appointment for end of October. Things continued, slightly worsening pins and needles and a heaviness and aching started in my left leg, I saw another GP in June and he made a ‘2 week rule appt’ I saw a neurologist (He was quite annoyed and said ‘you realise that your GP made the appt questioning whether you have a brain tumour when that clearly isn’t what he thinks’) anyway, he arranged a brain and neck MRI the following week. A few weeks later I got a letter from him which basically said that there was nothing ‘clinically significant’ on the MRI but if I still felt I needed to see a neurologist I should go back to my GP. During August I noticed that my sight didn’t feel quite so good, there was blurring in the outer third of the left eye and I was experiencing pain in that eye so I made an opticians appt, he told me that there was a marked deterioration in my left eye sight and described the reactions in my pupils as sluggish, he wrote to my GP about all of this and queried retrobulbar neuritis. I didn’t hear anything for a few weeks and then out of the blue got a letter from the original neurologist saying that he was arranging VEP test.
Fast forward to the end of October when I go to the original neurology appt. The neurologist looked at my previous MRI and said that there was an area of concern on my cervical spine which he needed to discuss further with his radiology colleagues, he also rang to get the results of the VEP whilst I was there which showed ‘poorly formed responses’ in both eyes. He did a full exam and said that there were some reduced responses in both hands and arms and in my left leg. The neurologist told me that he felt that there was an ‘inflammatory process’ going on and it was likely that I would need a further MRI and possibly a lumbar puncture but that he needed to discuss with colleagues and he would write to me. He also said that there was a neurological problem which could be something ‘like MS’
So, I got a letter from him fairly quickly and in it he wrote ‘signal change in upper cord seems real and additional subtle changes in the brain stem are noted therefore I have arranged repeat imaging of brain and upper spine to explore these likely inflammatory lesions before deciding whether she needs a lumbar puncture…I have already shared that we may need to do a lumbar puncture in light of the suspicion of optic neuritis’
I had the MRI (with contrast) a few weeks ago and have a follow up appointment with the neurologist at the end of February. I got home from work yesterday to a further letter from him which says ‘The previously noted changes were present albeit on this occasion they were felt to be more subtle. I will go ahead and arrange a lumbar puncture to examine the cerebrospinal fluid at which time she will have additional blood tests’
I suppose that the reason for writing on here and seeking some advice is that I am confused! My particular question relates to the changes being ‘present albeit more subtle’ on the second MRI – My understanding was that the contrast would help to show things more clearly.
Everything seems to be taking so long! In the meantime I continue to feel dreadful with the fatigue, numbness and problems with my eye along with the many other issues that appear on what feels like a daily basis.
Sorry for the length of this essay but thank you for reading it and I would really appreciate your thoughts.