I have been experiencing various symptoms for the past two and a bit years. It started with dizziness, vertigo, tinnitus and hearing loss (initially diagnosed as Meniere’s disease, then undiagnosed again because the hearing loss didn’t fluctuate). I had an MRI at this point, to rule out acoustic neuroma. This was then joined by double vision and a ptosis (both due to weak eye muscles in one eye, I was told). Since this time I have also experienced a lot of fatigue, extreme at times. At my worst I was collapsing into bed in the afternoon, now I can usually manage until 8pm but when the exhaustion hits it’s like walking into a wall - all of a sudden I go from normal to exhausted, rather than a gradual decline to sleepiness. I sleep for 12-14 hours, and I’m still knackered when I get up.
In January I started to experience pins and needles in my feet and hands, and also my face. These started as just tingling, then progressed to prickling. I went to my Doctor at this point, and he referred me for another MRI. Then last week when I was woken in the morning, I had a bit of a “funny turn”. I was extremely weak - not able to grip with my hands, not able to stand or walk un-aided and slurring my speech. My husband took me to hospital (understandably worried!) and I was there for two days. During this time three different Doctors mentioned that they were looking for MS (they also did a CT scan to rule out a stroke). I was told I was going to have a lumbar puncture - two separate doctors explained the procedure, and I signed the consent form, then they changed their minds and said they’d do an MRI of my spine instead. I started to feel better on the second day, and was able to walk again (albeit unsteadily at first) and the neurologist who was looking for MS said he’d do an MRI of my head, and if that was normal that he’d let me go and call me back for another MRI of my neck. The hospital was suffering from an outbreak of Noro virus, and he thought it was better that I went home and came back, rather than staying and becoming more ill!
Having been excited at the prospect of going home (the hospital had a “no visitors” policy, due to the virus) I didn’t listen properly to what the neurologist said. He said that the MRI looked normal, but I rang the hospital and they have me down to come back for an MRI of my neck. Are they still looking for MS? Or if not, what else might they be looking for?
Sadly the pins and needles are still here with a vengeance. In fact, they have got so bad that my feet are aching in bed and it’s affecting my sleep. Since I need 12-14 hours a night that’s no joke! I know it’s said that many other things mimic MS, but I’m not actually sure what those things are, or how they’re diagnosed. I’ve had numerous blood tests, I’m not anaemic nor do I have a B12 deficiency (I’m also not pregnant!)
When I get my appointment through I can ask the neurologist (and will), but the hospital said they’d write within a month, so any ideas would be really helpful in the mean time.