New to all this...

Hi all,

I’m new to all this, and am just looking for a bit of advice/guidance. It’s probably best that I tell my story from the very beginning…

Back in October 2009 I was working in an office, and suddenly I started to see this strange ‘flickers’ of light in the top right hand corner of my vision. I was so concerned that I went to see my (at the time) GP. He didn’t think it was anything to worry about, and prescribed me some strong paracetamol, putting the episodes down to a migraine. Anyway, fast forward two weeks, and shortly after arriving at work one Thursday morning, I collapsed and had a full-blown tonic-clonic seizure. After the seizure, the flickering lights in my vision disappeared. I then had three more during the following fortnight. They then managed to control them with a daily dose of Epilim.

Unfortunately however, this proved to be short lived, as in February 2010 my right hand began twitching/jerking, which lead to a fifth seizure. My Neurologist then put me on Keppra, which stopped the hand jerking and the seizures - these have remained fully under control to this day. I began to lead a normal life again and even got my driving licence back.

During the initial tests, my EEG test was perfectly normal, and my MRI scan results read ‘Your test has come back normal. We did spot one minor abnormality, but certainly don’t feel this is related to your seizures’. I was never told, nor did I enquire, as to what that abnormality was.

Fast forward to September 2015, bearing in mind I had been absolutely fine for over 5 years, suddenly the flickering of light in the top right hand corner of my vision returns. It comes and goes at random intervals throughout the day (but is at it’s worst when I first wake up in the morning). I also experience carpul-tunnel like symptoms in my right hand (pins and needles, weekness etc) which again, comes and goes. I had an EMG test which found nothing. My long-distance vision also seemed to suddenly decrease.

So for the first time in over 5 years, I booked myself in to see the Neurologist. He said he didn’t think the flickering lights etc would be anything to worry about, but that his threshold for repeating tests is fairly low, and therefore he agreed to repeat the EEG and MRI tests. A couple of months went by, and all I got was a letter arranging an appointment for me in September, but no indication of the test results.

So today I decided to visit my GP, determined to find out what I could (as I’m sure most of you know, there’s nothing worse than being left in limbo with things like this, and I wasn’t prepared to wait until September that’s for sure). The GP found that the Neurologist had written a letter back following the tests roughly saying the following:

“Unfortunately the repeated MRI scan has shown deterioration of (can’t remember the two words he mentioned here) which points to demyelinating disease, I will arrange to see him back in clinic to discuss the options going forward”. The GP actually didn’t intend on me seeing this letter on her screen and quickly minimised it, but I insisted she got it back up!

If it does turn out to be MS, then could it explain the hand issues, tiredness & fatigue, flickers of light, muscle weakness, even unexplained seizures? I also feel weak after exercising too much, and my arms turn to jelly if I’ve been carrying heavy shopping.

Should I panic at this stage at the fact that my vision decreased last year? (It’s a minor long distance prescription, I visited an opthamologist who gave my eyes and vision a clean bill of health). I will put up with the weakness etc, but losing my sight is the worst thing I can possibly imagine.

Given all of this, is my Neurologist right to make me wait until September for an appointment, and not make it an urgent one? (I did telephone his receptionist asking if it could be made sooner, and in a rude manner she said ‘well, the fact that it’s not an urgent appointment is usually a good sign’)

Any thoughts or advice would be greatly appreciated.

I’m sorry I can’t offer any advice, I’m new to this and confused myself, but I just wanted you to know I’ve read your post and I feel your pain. Illness, especially a chronic illness is very difficult to cope with. Good luck x

hi bean (excuse the abbreviation)

september isn’t far off.

your symptoms could well be ms but could also be several other illnesses.

your eyesight should be alright but you may suffer bouts of optic neuritis.

if you think of your central nervous system as a series of electrical circuits it helps to explain why everything is such hard work.

so really when my legs are playing silly buggers it isn’t their fault, in fact they are doing well considering the wrong signals getting through.

mindfulness meditation is great and has really helped me.

good luck

carole x