but here goes nothing…
This is my first time here, because I’ve not actually been diagnosed. About 10yrs ago I had a very funny episode upon waking which was mostly complete muscle weakness (couldn’t even lift my head) and blindness in both eyes for just a few seconds. Nothing was ever diagnosed.Then about a year after that I had long lasting dizziness that went on for months, I was told it was an inner ear issue, but eventually had an MRI which showed two lesions in a particular pattern which I was told at the time were consistent with MS. The neuro at the time said they need more lesions or a lumbar puncture to diagnose, my symptoms went away and all was fine. A couple of years after I had widespread numbness and tingling of my legs and feet, had another MRI which neuro said was fine and basically go away and don’t bother him again. So I did. Sorry, I’m going on a bit…
Fast forward to about 9 months ago and my right foot went numb. Couldn’t feel a thing. Had the nerve conduction tests which said my peripheral nerves were fine. GP referred me to neuro as I was having other symptoms by now. Lots of night time twitching (big ones in my right leg and right shoulder) and small daytime ones (under right eye, right buttock-ha! Basically all over my body, but way more on the right). By now I’m also having massive trouble walking, can’t stay in a straight line and for about 4 months was having real problems picking my legs up, so was doing an elderly person shuffle. This was much much worse when the temperature was warm and I felt very weak all over. I was also seeing flashes of light from my right eye at this point, and sometimes little rainbows.
Had the neuro exam about 3 months ago, which basically said I was fine (fell over doing the balance thing and couldn’t tell when the ‘vibrator’ on my ankle was on or off, but fine nonetheless. But this neuro referred me for another MRI because of the weakness, when I told her about the previous lesion she said lots of people probably have them but don’t even know. So… I had the MRI done 6 weeks ago, it was just a head MRI. 2 weeks after the MRI I got this weird eye thing which I thought was conjunctivitis but GP sent me straight to A&E who said Optic Neuritis(aargh), but other docs have since said was ‘just’ inflamed eye nerves. I don’t want to make a massive deal of the eye symptoms because I just had an optic exam and my vision is fine, and I REALLY need my driving license.
So, I phoned the neuro secretary yesterday because my results were not yet back. She said there are no new lesions from the head MRI and she will book me back in to see the neuro. They’ll send me a letter out in due course’. I was so so certain that these were MS symptoms, but without any new lesions I look and feel like a first class idiot! So I guess partly I wanted to vent, and also to ask if anyone else could relate to this??? I guess I really need to speak with the neuro.
Forgot to say, my mum has Myasthenia Gravis, my grandad (her dad) had RRMS and my grandma (her mum) had MND, so we have a very strong family history of neuro disorders! I just feel at this stage that I’m going to get fobbed off with fibromyalgia… I know no new lesions is good news, but now I’ve hit a wall…