I have the follow up appt with my neuro on Tues where I presume I will get the results of my LP and possibly a dx.
How long is a typical follow up appt and what questions should I ask?
Background: I am 48 years old, have a 16 year history of neuro problems, mainly migraine, fatigue and tightening and p&n down whole of right side. Two brain MRIs in 2000 and 2006 which showed two then one white spot in right periventricular region. Symptoms attributed to stress, mild head injury, hyper extension and subluxation of cervical vertebrae, migraine, endometriosis, and, of course, anxiety.
26 April 2016 developed extreme pain in neck and transgeminal nerve followed by neuro symptoms over whole body including worsening and recurrence of right side symptoms and inability to sleep for extreme discomfort. Told to take paracetamol and of course, attributed to anxiety… After numerous returns to docs, calling out paramedics, going to A&E etc I was dismissed with tramadol, which didn’t help at all. So, paid for MRI of spine ourselves on 8 June and discovered 8mm lesion at C2C3 on left side of cervical spine. Then got NHS MRI of head which showed a few small deep matter lesions and a single subtle periventricular lesion (presumably the same one as before) My left eye is very painful, and I thought my vision was blurred but have had two optometrist apts which found nothing but very dry eyes and my astigmatism. The dry eye drops totally resolved the blurring (slightly embarrassing) but I still feel there is something odd, would like a VEP.
Neuro said brain is not typical of MS, but MRIs were without contrast. Did lumbar puncture for additional info.
I still feel terrible and although movement now OK so can walk, I am in a lot of pain (taking Gabapentin) and unable to do anything more than cook one meal and wash up before muscles tighten. I hate that my mouth is weird in the right and I dribble sometimes. My eye bothers me and hurts. I can’t walk far and the fatigue regularly means I end up flat out in bed for days. I can’t tidy my own room or get to the Drs on my own. Feeling thoroughly demoralised because I thought I’d be able to do more by now. Today a friend came round for the first time and spent an hour with me, now I feel like I’ve climbed Everest and then fallen off the top!