Warped Body Clock. Please help..

[Woodturnerman]

Hi All.

I have had ILOCA for about ten years now but only had a definite diagnosis in December 2017 at Oxford.

My condition has deteriorated since November 2017 because my DLA, Pension Credit etc. was all stopped.

For many years now I find myself sleeping all day and staying up until I feel tired enough for bed. I usually sleep well but have recently had a few nights when I could not get off. If this happens I get up, have a cup of tea and then try again. This normally works.

Is this normal for my condition ????? It is difficult to find anyone to ask as only Ataxian's will know.

I look forward to any help, Please

Dave

[suzie44na]

Hi Dave, I find it hard to sleep at times and I do the same as you have a drink and this does help. I don’t have a diagnosis as yet after 22years, but still hoping I will find out one day. I also feel tired a lot, I think tiredness is part of a lot of diseases, it was one of my first symptoms and doctors thought I had ME at the time. My DLA changed to PIP, you should ask for these forms to fill in now, as it has all changed. When filling in the form you have to fill it in for your worst days not just the better ones, and send in all doctors and specialists letters. I also asked my GP for a letter to send in also.

All the best

Suzie

[Woodturnerman in reply to suzie44na]

Hi Suzie

Thank you for the reply. I am surprised that you had to wait so long for a diagnosis Has your doctor refereed you to a neurologist ????

My DLA was cancelled November 17th last year and I have only recently got a tribunal date for 30th July. Fingers crossed that they are sympathetic am I get the higher rates which I think my condition warrants

Take care

Dave

[suzie44na in reply to Woodturnerman]

Hi Dave, I have seen lots of neurologists but still no definite diagnosis, but still hoping, I joined the 100,000 genome study, so hopefully some day they might find something. Good luck with your DLA.

Suzie