[jammyh]

Hi all. I posted this in the welcome forum and it was suggested I re-post here.

Sorry if its a bit long but I thought the more info I gave the more helpful it would be. 8 months ago, I felt very off balance (not dizzy), but like the world had shifted on its axis kind of feeling. This lasted about 3 days. No ear infections. A couple of days later, when walking home, my legs began to feel very heavy and my upper thigh muscles really weak. Out of nowhere, I suddenly lost all control of my left leg and fell over. I was stranded for about 10 mins while my daughter brought her car over. I regained enough strength to get in the car and get home. From that point on I have been unable to walk properly.

- perculiar gait -wide, toes pointing inwards, knees gong inwards, leaning forward (ataxic/spastic??)
- No pain as such
- Balance all off - I gravitate to the left
- Need to hold onto walls for balance and support round the house
- Unaided, I can only walk very very short distance (20/30 metres) before muscles fatigue and stop working - they become very stiff so I drag my left leg, my upper body moves but the rest doesn't, and if pushed further I lose all control and feeling and fall over.
- I struggle to get out of chairs and climbing stairs
- Resting makes little difference - limited improvement when I start to walk only lasts for a very short time.
- I get very breathless when walking
- RLS significantly worse and is a nightly occurance (I used to only suffer in summer) (I think my doc said I had Reynards or something)

I saw a neurologist who arranged a plain mri (no contrast). I also had an emg and nvc - carried out by student neurophysicist under supervision. On basic neuro obs he said I showed a positive babinski reflex and definate pronator drift - he did not explain what this meant though. He did the emg and nvc on right ankle and right shoulder (neither of which caused me any problems at that time). Needless to say the tests showed nothing significant. A full range of blood tests done but don't know what - all ok.

The neurologist told me because these two tests were okay there was nothing neurological wrong with me and said it was my body reacting to the cancer I had had 15 yrs ago and that it was probably thyrotoxicosis. So she told me to see an endocrinologist. However, I already have one who has monitored me closely for years but did another full range of tests and bloods just to be sure and categorically stated my problems were definately not endocrinological or chemically related. He bounced me back to the Neuro. I saw the neuro again who was not happy with this and just repeated there was nothing wrong as my tests were ok so it must be delayed shock from cancer all those years ago. I asked her why the emg was done on the side that caused no problems and was told that as our bodies are symmetrical, it makes no difference where the tests are done. Not sure I agree with this - anyone else think this is right?

Since all this kicked off, I have deteriorated - both legs are now affected and my upper arms are getting slowly but progressively weaker. I have very dry eyes and get repeated eye infections. I don't have ptsosis of the eyes but when I get tired or fatigued, it becomes very obvious one eyebrow is much higher than the other. I have been disallowed from driving as both the neuro and my gp said it would be too risky and dangerous. This all also means I cannot work as I had a very physically demanding job in a costume/wardrobe department of a theatre. I am therefore pretty much housebound which is so frustrating.

I am currently waiting for orthotics as the neuro physio wants me to have knee braces because when I walk my knees snap back into hyper-extension which, not only painful, is putting me at risk of adding functional injuries to my already wonky legs. I am also waiting for an appointment with another neuro out of area as my gp is really unhappy with the current one. Chances are this appointment will take months - this is the UK after all.

Can anyone identify with the above - work is getting really pissy with me because I cannot tell them whats wrong, or when, if at all, I will be able to return. Any info, advice, suggestions would be very much appreciated.

Thank you for reading - apologies again for it being so long.