View Full Version : Things they never explain...

30th March 2012, 15:42

I was diagnosed at the end of 2010 and look in here occasionally but never posted. Well today I thought I'd ask if anyone else has the 'niggling' symptoms listed below. Somehow the neuro's never really answer me on these and I'm intrigued to know if it's just me, if they're nothing to do with MND or whether it's normal (whatever that means)...

1. Bloodshot eyes most of the time, eyes get tired and bleary at the end of the day.
2. Very strong stretch reflex in my legs, and increasingly my trunk, first thing in the morning, or indeed during the night.
3. Everything's much looser in the morning than the evening. Often at night when I get up from the sofa to go to bed my legs are so stiff I can barely walk, yet in the morning it's all so much better. Is it because it's the end of the day and therefore I'm tired or because I've relaxed and stiffened up whilst sitting down for a period?
4. All-over body twitching for 3 years now (which they tell me is lower MN) yet mostly upper MN symptoms with only localised muscle loss.

So, am I unique? :)

30th March 2012, 16:11
Hi Colin

Yes you are , and pretty much the rest of us too, each have different symptoms at one time or another and a few of yours i can relate to, the morning is my best time without doubt the evenings are my worst ,and yes the trek up the stairs is not good, So welcome i bet there will be others who empathise with you very soon all the best


30th March 2012, 16:32
Hi Colin,

I too get what I think are extensor spasms in my legs when I straighten them in the morning. And apart from being really stiff with tight calf muscles when I first get up, walking etc is better in the mornings and deteriorates as day goes on especially if I do too much.


31st March 2012, 10:23
No-one with sore eyes then? I do wonder if it's the Riluzole but I came off it for five weeks last year and my eyes never really got better.

Pete, thanks for the reply. It seems things do seize up in the evening!:confused:

Jonesy, thanks for your reply also. For me the morning stretch reflex thing was one of the first symptoms, it started some months before any twitching and two and a half years before the diagnosis. Was it the same for you or is it something that's developed as things have gone on?

31st March 2012, 15:19
Hi Colin,

No it wasn't the first thing. I can't remember when it started but quite some time after first symptoms.


1st April 2012, 15:57
My husband gets one sore eye. GP gave topical anti biopics. I mentioned into,neurologist at appointment this week and he does. Not think that it is anything to do with MND.

1st April 2012, 17:18
Yes, far too easy to blame every niggle on this ridiculous condition!

Just for a little light relief.....

Did you hear the police picked up two boys, one was drinking battery acid, the other was eating fireworks ....they charged one and let the other one off..:D

1st April 2012, 23:29
I've got problems with both eyes. I get a burning sensation and it can affect either eye, and happens several times per day, every day. It's extremely painful.
Also, the floor looks like it's sloping making walking very difficult.

2nd April 2012, 19:12
Welcome Colin

I get all of the symptoms you mention apart from bloodshot eyes, although my eyes do water and sting as mentioned by others here. I am actually the opposite as I am stiff as a board in the mornings.

2nd April 2012, 19:18
I'm intending to go to see my GP following on from Magic's comment. My eyes are constantly bloodshot which gets worse through the day. Some days they are quite painful culminating in a headache behind my eyes. I wonder if something is making my eyes dry and prone to soreness. It all started a little time after I started taking Riluzole at the end of 2010 so I'd half put it down to that but it doesn't sound like a common issue so maybe has nothing to do with MND or the drugs.

Is anyone off anywhere nice over Easter? Both my kids are away on school trips this week so my wife and I are off to York for a few days from Tuesday morning. My walking is getting very sketchy and I must admit to a certain amount of trepidation. I gather it's possible to hire wheelchairs but I'm not sure I'm mentally ready for that yet. Still, I think it's coming soon.

Any tips on where to go in York? Other than Betty's tea shop which is already top of the list!

2nd April 2012, 21:06

I take Riluzole and cant say i find any probs with it ,as you say who knows what is and isnt MND related, Enjoy the York trip we have a local lady there Elle, she would know i guess, The Minster is worth a walk around if you havnt seen it before and up to the walking,and i am much the same with the wheelchair situation and are trying not to think to much about that just yet.


2nd April 2012, 21:11
Colin, we are seeing a homeopath and she suggests that there is an ingredient inmost shampoos that can cause irritation.She has recommended organic shampoo which I have bought but Peter has yet to try.He was wanting to use up the baby shampoo (my attempt to reduce irritation)first. We are currently at a hotel in Northumberland ready to celebrate my 60th tomorrow. Peter has been in bed since 8oclock. Hope you enjoy York.

2nd April 2012, 21:26
Hi Magic,

Have a great Birthday its a special one you know


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