Hi all im gill …where to start .basically for the last ten years ive been over tired …sleeping through the day napping when i could .i blamed it on the fact that two of my kids had autism and didnt sleep much in the night …but they grew out of that and i was getting full uninterupted nights sleep .over the past five years my energy has got worse and now im pretty much to the point where i dont have any at all…it came to a head three years ago when my mam got so worried about me falling asleep at her house every day whilst my youngest was at nursery .she was worried about me and told me to go to the doctor and thats when it began …the doctor took bloods and it came back that my vit d was only 16.4 and that i hadwat looked like a mild infection but “normal” any way she sent me off with vit d …6 months later i went back as i was still feeling like poop she took my bloods again and i was normal i told her i didnt feel normal so after i sat there looking at her for five minutes thinking am i just supposed to leave she decided to refer me to the chronic fatigue syndrome service …ugh i waited six months for that appt to go sit infront of three people who basically asked me why i was there .urr you tell me? Any way they decided i dont fit the bill for cfs and sent me off to a neurologist …wait for it …9 months later … He sits in a room with me for ten minutes and magically decides that because my kids didnt sleep all those years ago my body is just out of sync and over tired …ok then …so yep referred to the sleep service . Meanwhile ive been back to my doc about three times inbetween and asked for an mri scan to be told no …i mentioned ms and she looked at me like i just took a dump on her floor …i dont have enough symptoms aparently .now im 31 years old i sleep all night then up to 5 hours a day .my husband finishes a 12 hour night shift and then stays up to get the kids to school because i dont have the energy to get out of bed .apparently the sensations in my legs are just restless legs because im tired and the icing on the cake was me losing my vision temporarily a few weeks ago when i got out of the bath … The bath i put off for three days because i didnt have the energy to wash. Now i went to the optition who said my eyes are fine and whatever caused me to lose my vision has something to do with something going on with my body and has sent my gp a letter to make an appt for me …my appt is friday and i would really love some advice on what to do to finally pursuade the gp to refer me for this mri scan i so badly need…sorry it was long but i feel so good getting that all out
I can imagine you are at your wits end trying to find out what is wrong with you after all these years.
Unfortunately, MS is one of those odd conditions / diseases that you could slot an awful lot of symptoms into and come up with a diagnosis. So it doesn’t necessarily follow that because you have severe fatigue and other unexplained symptoms that it is all caused by MS. Nor that it isn’t MS either. It’s a disease that is only diagnosable by a neurologist; and only then after a neurological examination which causes him/her to order tests including an MRI.
So as you have an appointment with your GP, I suggest you ask for a referral to a neurologist. It’s better not to suggest to either your GP or a neurologist that you think it might be MS. Instead just say that you wonder whether all these symptoms over the years have a neurological cause.
If your GP will not refer you to neurology, and you can afford the initial appointment, try finding a neurologist with both a private and an NHS practice. Arrange to see the neurologist privately for an initial appointment and examination. If that neurologist considers tests (including an MRI) are appropriate, see if you can be referred back to the NHS for the (expensive) tests.
Meanwhile, try writing down all the various symptoms you have experienced, include dates, how long symptoms have lasted and whether they have gone away or stayed with you. Things like losing your vision etc. (Although if there had been damage to your optic nerve, I would expect the optician you saw to have been able to see it.)
And I also suggest starting to keep a diary of your health and in particular your sleep patterns. I notice for instance that you joined the forum and posted this message in the middle of the night (although that could of course be just the worry that’s keeping you awake). Keep a record of when you sleep and what you feel like when you wake up. It could after all be a sleep disorder rather than MS since sleeping issues and fatigue appear to be a constant feature of your problems.
Good luck with it.
Thanks for that there is alot of frustration for sure.Like i said i have Already been reffered to the neurologist who did no tests at all and just jumped on the lack of sleep thing.your right about the late night post i had all of this flying around in my head and couldnt nod off.im just very frustrated because once they do this sleep study they are going to diagnose me with idiopathic hypersomnia and give me tablets to keep me awake .i mean that may be a short term fix but it isnt going to get to the root of why my body is like this.
Hi again Gill
Perhaps you’ll have to go through the sleep study and wait for the results of that before jumping the gun. It may even be that they can give you some drugs to help.
The way I see it (now I’m a bit clearer about where you are, apologies for not reading your initial post carefully enough), is that you’ll do the sleep study and decide either that it’s idiopathic hyposomnia and give you some medication for it or that your problems are caused by something else.
If it’s the first, then the drugs will either help (if it’s the correct diagnosis) or they won’t, and maybe they’ll do more tests possibly including an MRI.
If they decide it’s not hyposomnia then they’ll presumably do some more tests.
Either way, doing the sleep study won’t hurt, and may even help.
Meanwhile, as I said, keeping a diary, especially of your other symptoms will help you to keep track and then to report back to the neurologist.