Hello
This is my first post, possibly on any forum, but I’ve been having a read through what other people have written and can relate to a lot.
It would be great to hear if anyone else has had any similar experiences? Also if you knew how long does it normally take to get a diagnosis? Does inflammation on the MRI scan mean MS? What could the oral doctor have seen on my facial CT scan? If it’s not MS what else could it be? Any comments/advice will be gratefully received
Here’s my story so far:
So it all started when I noticed that when I turned around at work to look at someone out of the corner of my eye I could see two of them. I’m 23 years old and have never had any health or neurological problems before, I didn’t realise that double vision was such a worrying symptom and booked myself in for an eye test thinking maybe it was because I’d been staring at the computer too much.
The opticians referred me immediately to an eye specialist at the hospital who did a few little tests on me and had a look in my eye and said he couldn’t see anything wrong so said to come back in a few weeks for tests. To be honest he made me feel a bit silly and it took about 4 weeks to be referred for the tests. In this time the double vision got a lot worse and it got to the point where I was panicking about being able to see while driving. Then suddenly it went. I didn’t go back for the tests and assumed it was a virus or something.
A couple of months later I went into hospital for a minor nose operation and when I came round from the anaesthetic the double vision was back, but again only when I looked in the very corner of my eye. Around the same time I’d also noticed that I’d been feeling very sick all the time and I had a tingling feeling all over my tongue which gave me a horrible taste. I started being randomly sick too which was very unusual for me. I had been to the docs who gave me some thrush cream and told me to do a pregnancy test.
I hate being off work so about a week after my surgery although I’d been signed off for two weeks I went to the doctors to get signed back into work. While I was there I met a new doctor who was very very helpful. I was concerned about feeling sick, dizzy and tired all the time and also mentioned the double vision and a new symptom which was a numb tingling feeling all over the left side of my face and scalp which felt strange when I rubbed my skin or put make up on or brushed my hair.
She sent me for bloods and immediately referred me a neurologist who saw me at the hospital the week after. The neurologist had a chat with me and did a few tests like pin prick and tested my reflexes. Everything seemed fine and again I felt a big silly but he said he’ll send me for an MRI just in case.
The day after the MRI the doctor rang me up and told me that he’d found inflammation on the scan I asked him what it was and he just said that I needed to go for a lumbar puncture, 6 weeks later I’ve been given the date for the lumbar puncture in another 4 weeks.
Confused and worried I started googling and MS seems to be fitting every symptom. I went back to my GP who said yes I am being tested for MS but it’s likely this is just one episode that will be documented and it could be a long long time before anything happens again or I get a definite diagnosis.
I also suffer from TMJ (aching jaw) which my dentist referred me to an oral surgeon (before all this). I have trouble with my wisdom teeth which I thought was causing this but my x ray showed the tooth was close to the nerve so I had a CT scan on my mouth to see if I could have the tooth out or not. Last week I went back for the results and they told me that they need to refer me to neurology. I said I’m already seeing them is it more inflammation? They said yes but wouldn’t say any more as they weren’t the right doctors.
I now seem to be getting different symptoms coming and going almost daily, I’ve started writing a diary of symptoms but it’s including things like, numbness on arm, oversensitive soles of feet, burning in my foot, crazy itching in my arm, heavy leg, my knee sometimes seems to slightly ‘pop’ or drop down, pins and needles in fingers and palm and today while that was happening I did the pin test and although I could feel the pressure of something being there I couldn’t feel the sharpness of the pin prick. The numbness is strange in itself I struggle to explain it because I can always move normally and the tingling tends to happen when I gently rub the skin like drying myself with a towel and stuff
Sorry for the essay, I like to get it all out without boring my boyfriend with it all.
So now I’m waiting until the end of the month to have the lumbar puncture which doesn’t sound fun but I’ve got so many questions I just can’t wait till I get to go back and ask them!
