Hi all
Not sure if I should be here or not - my head is a mess at the moment.
18 months ago I had some odd spasms in my arms, that left my arms twisted up for a few hours at a time - very unpleasant. This happened about half a dozen times over a 2 week period, then passed and was forgotten about. At the time it was put down to stress.
Since then I have had 3 more “episodes”, each one worse than the previous. Last summer I had more spasms and found myself tripping over words, getting tongue tied and feeling generally unwell. This happened again in October 2013, with the spasms being particularly bad in my hands, tripping over words, plus the new addition of blurring in one eye.
Current episode started about 4 weeks ago, and is by far the worst yet. Random spasms in both arms, hands, calves (feels like I have cramp in calves but without the pain, and lasts for several days at a time), funny spasm in one eyelid (different to normal twitching - left me exhausted and dizzy), tremor in random body parts lasting up to 3 hours at a time (again exhausting). I can’t speak properly, my memory has turned to mush and my left hand keeps going completely numb - most bizarre. All episodes have been accompanied by extreme fatigue and strong feelings of depression.
I finally bit the bullet and went to see my GP a few weeks back. She asked me to keep a symptom diary, which I had been doing anyway, just because my body seems set on doing such unpredictable things at the moment! I went back and saw my GP again on Friday, because I am exhausted and increasingly frustrated with my body not doing the right things! She has been brilliant, and has referred me to Neurology. MS is one of the possibilities that have been discussed, and I realise I probably have a difficult journey ahead in the way of tests, before I get any kind of diagnosis, whatever that may be.
I guess I am here because I am scared. Terrified in fact. I lost my mum to MND only 3 years ago, and even though my symptoms are nothing like hers, it still weighs heavily in the back of my mind! It scares me that for whatever reason I appear to have lost control of my body - does that make sense? Having had 4 “episodes” now, I can only assume that once this one passes, there will be another. I can feel my confidence seeping away rapidly, and I am becoming increasingly anxious about driving any distance, in case my arms or hands or even legs decide to go in to spasm whilst driving.
I have been bottling things up for a very long time. Shrugging things off and making light of it. I have a 6 year old daughter, and I try and make it a joke with her: “Oh look, mummy has the shakes again!” or “Oh look, my thumb is stuck in a funny position, how silly!”. After seeing the GP on Friday and getting the Neurology referral, it all finally got too much, and a very emotional day ensued. I broke down in tears and finally told my sister everything that had been going on (had been avoiding doing so). I have also now told a few close friends, and it feels like a massive relief to have done so.
Anyway, sorry, lots of waffle. Guess I just want to get some shared experiences - what is everyone else going through, what is the diagnosis process like, how long did it take etc.