Hi
This is my first post. I’m undiagnosed with anything yet.
About 6 weeks ago I started to feel really unwell. I thought I was coming down with flu as was really achy and tired but had no temperature. I woke up in the night with a tight chest like someone had put something tight around me. A few days before my eye Socket become sore with eye movement and then my vision become very blurry and hazed. I decided there was no point seeing a doctor about feeling unwell as it was probably a virus but I was concerned about my eye. Thinking I might have detached my retina, I went to the opticians for an emergency appointment who then sent me to the hospital eye clinic the following morning. I was told I have optic neuritis and was referred to a neurologist and advised I’d need an MRI of my optic nerve and brain. I also had blood tests done which have come back all clear.
Over the next few days I began experiencing a tight band feeling around my arm followed by awful pins and needles in my arms and fingers. This would spread over my back and face. My fingers would go stone cold. I also started getting pins and needles in my legs too. My legs and arms became weak and walking short distances is difficult and I feel my legs spasm. My arms tire quickly and my legs feel numb from knee downwards. My thinking process has really been affected with my constantly forgetting what I’m doing, why I went into a room, spelling words, forgetting conversations etc. I’ve also been really dizzy but put that down to my eyesight issues. The tiredness has been horrendous. I’m normally a max 6hr sleep a night kind of person but I’ve been sleeping so much more and napping during the day totalling about 10 hours a day. When I lay in bed and start to fall asleep, my arms and legs jerk quite suddenly like when you dream you’re falling off a cliff.
I was really lucky to get an appointment quickly with a neurologist and after his assessment he advised that he strongly suspected that I have MS. I hadn’t had my MRI at that time so he said he needed to see the results to confirm.
I’ve now had my MRI of my optic nerve and brain and need to return for my spinal cord. My symptoms haven’t really changed much. I’m walking a little better than I was but far from normal and I’m dragging my right foot which is the worst for spasms and I need to rest regularly. 5,000 steps a day is quite an achievement at the moment!
About 4 years ago I developed a very sudden tremor in my arm. I had a brain MRI then which was clear and I was told I just had essential tremor. After about 7 months it eased as is now only an issue if I’m tired or unwell. I haven’t taken medication for it for years and not really thought much of it since it eased.
I’ve received my MRI results today for my brain and optic nerve. The neurologist has advised that my optic nerve results show ‘dilation of optic nerve - probably due to Dural Ectasia’. I’m having my MRI on my spinal cord in a couple of weeks and I’m back with the neurologist the week after when he will discuss the findings with me. Im Not sure if this means that I haven’t had optic neuritis but had Dural Ectasia instead? lm not sure if Dural Ectasia has links to MS like Optic neuritis and wondered if anyone else has ever had this? I’m back at eye clinic this week so hopefully I will get some insight (pardon the pun!) from them. My brain MRI shows no change so I’m guessing MS isn’t as likely as the neurologist first thought?
I’m Somewhat dazed and confused by it all. I’m normally a fairly active 33 year old female. We’re normally out all weekend as a family walking miles but at the moment I’m struggling with being out for a couple of hours. Think I’ll just have to wait and see. Although it feels like I’ve felt ill for ages and time is passing slowly (it’s only been 6 weeks), I know I’ve been lucky to have been seen so quickly. I’ve decided not to think about it too much as I can’t do anything about it. I also have a fast approaching holiday which I’m concentrating on trying to feel better for (not sure how much positive thinking will help but it’s worth a shot!).
Any similar experiences or info much appreciated.
thanks for reading.