My heads all over the place since I have Been told I very likely have ms due to the MRI scan showing 3 lesions & symptoms. I’m not not coping day to day, not sleeping g as every time I close my eyes I think MS. I’m missing days off work as I haven’t slept in 2 weeks which means I have zero energy, gp won’t give me anything to sleep as I have not had full diagnosis yet. I need to sort my head out, any advice??
I am sad that you are having such a tough time. I am in a very similar position to you . I’ve not been diagnosed but in a letter from the opthalmologist to my GP it says that because I have several lesions it is likely that I have MS and I have been referred to a neurologist. I saw this letter for the first time yesterday. (I’d had ON in Feb which is why I had the MRI).
I am trying very hard to “keep a lid” on letting my emotions get the better of me , and manage some times better than others. I have been telling myself that even if I have MS it’s not going to turn me into a different person over night.
I also find I am much better if I am busy, and not doing the things that I find difficult (like being in open spaces, where I seem to have problems with spacial awareness).
I do ironing which I can do easily and gives me a sense of achievement. I do Sudoku puzzles and read .
I work part time and am much better when I am at work.
Sometimes, especially when I am on my own, I do succumb to the tears, but I think that is understandable in the circumstances.
My GP suggested Nytol yesterday, but I don’t really have a problem sleeping. I don’t know if that’s a good suggestion or not.
Because it’s so new to me too, I can’t be of much help. but just wanted you to know that you are not alone, and it’s understandable to feel how you do.
Take great care of yourself.
Sally thank you so much, it was optic neuritis that was the reason for my MRI also, I have seen a neurologist who won’t diagnose without further blood tests & visual Evoke test, the blood tests have all come back normal so deep down I know it’s ms. I’m a born worrier anyway hence the reason I’m not sleeping, I have tried nyt but they are not working for me, they actually made me more alert …I’m going to try my regular gp & see what he says. Xx
Was the ON your first symptom? It was like a bolt out of the blue for me. I’ll probably have to have more tests before I get a formal diagnosis, but since it’s been suggested, I keep thinking I’m having other symptoms! Don’t know if that’s anxiety. It’s a really bad place to be in isn’t it?
I think that’s a really good idea to ask your GP again because tiredness makes it harder to try to stay a bit positive .
I’m trying to go to bed at a reasonable time , and eat healthily . I’m also trying to keep involved in things when I sometimes want to crawl under a stone!!
Let me know how you get on,xx
Yes ON was the first symtoms that I complained about, now that I know it’s ms I know I have been having other symptoms for at least 5 years…burning feet, electric shocks & tingling & u r right anxiety makes it much worse. I try to go to bed around 10pmbut lie awake think until around 6 am them I’m not fit for work. I’m really going to have to make gp listen Thanks for listening to me xx
One way to get round the GP not wanting to prescribe anything is to phone the neuro’s secretary and ask (plead?!) for help: you have a problem with X, your GP won’t prescribe anything without the neuro’s recommendation, what would he/she suggest? Then tell the GP what the (hopefully helpful) answer was. It would be worth speaking to your local pharmacist too - they should be able to advise you on over the counter stuff to help you sleep. Insomnia is awful I hope you find something to help. Getting a good night’s sleep helps in so many ways, including helping us to face the day in a much more positive frame of mind - and we have more than the average person to cope with sometimes Karen x
Aw thanks karen I will try that on Monday