A bit about myself. I am 55 years old woman and have had several things go wrong with my body over the years, so much so that I’m thinking of donating it to science.
I’ve ended up on this website from a journey that started in ENT. My hearing has diminished on one side with bi-lateral tinnitus and I was sent for a brain MRI to see if it was due to an acoustic neuroma. A couple of days after the MRI I was called by my consultant’s secretary asking me to come in first thing the next morning to discuss what was found. A sleepless night followed and I was greeted by the words “we found no signs of tumours”. Great I thought, until he said “but…” It turns out that I have signs of demyelination and was told it could have started years ago and not to worry but that I’m to be referred to a neurologist. I then asked, if it was years ago, why it hadn’t been picked up by the previous brain MRI that I had four years ago for my trigeminal neuralgia. He then checked my records, and sure enough it was picked up then as well but no-one mentioned it or followed it up? The ENT consultant said he wouldn’t answer any of my questions and that I needed to see the neurologist and that it will take a couple of months plus to get an appointment.
When I got home I did what I usually do and googled. I’m one of those people who do not like being in the dark and after my trigeminal neuralgia, I’ve made a point of being well informed (as I got more information about it from people who had or had had the disease). But every way I worded the search it still kept coming back to Multiple Sclerosis. So here I am. Asking you experts and I mean that in a most respectful way.
My daughter has said for years that she thought I had ms but I’ve always shunned her diagnosis. Nevertheless, while reading various accounts about the disease/condition, I’ve thought about past incidents I’ve had; severe vertigo last year that lasted over three months (gone now), my trigeminal neuralgia (fixed with brain surgery), numbness in my thigh, losing the feeling/movement in my left arm about 10 years ago (movement fixed now due to cervical disc replacement but left with minimal feeling in my arm and almost continual crawling down my spine from the cervical area), my continual fatigue (I’ve always put the cause as lack of exercise due to arthritis) and lately (last few years on and off) I’ve been having what the Dr’s are calling ocular migraines (kaleidoscope patterning which starts very small and eventually affects the whole of my vision), which last anything from 20 mins to an hour, leaving me with very achy eyes (no headache attached though).
I guess what I’m really asking is:
Is there any other reason other than Multiple Sclerosis for the demyelination? I do realise that you won’t have all the answers but I’m wondering if any of you had demyelination and got a different diagnosis to Multiple Sclerosis or similar?
I have just looked at the amount I’ve written. I do apologise but thank you if you’ve got this far.