Anyone ever had the same problem?

Hi I've been suffering a lot lately with my face falling with weakness on one side and my one eye not opening, I get very weak all over this could last 4 10mins or even up to 6 hours now has been the longest. Was treated 4 a stroke the 1st time this happened. I could take these turns(what I call them) a few times a day and lately it's nearly everyday. My last one was 2day at 6pm it's now 9.37 and my mouth still isn't back to normal. Been 2 see a neuro doc and he has ruled out lupus in the Brain not sure on the right term 4 it. So now am waiting to be admitted to get hooked up 2 a video EEG machine 4 a period in hosp, is there anyone out there this has happened too? Have any answers or advice? An please don't tell me not to worry cause everyone is saying that but when it's your body it's hard.


18 Replies

  • Have you had a brain MRI? This problem is either one with the facial muscles themselves (inflammation, for example) or one where the nerves controlling these muscles do not work properly (again due to inflammation in the brain, for example). EEG is fine but an MRI should also be done. Until you find the cause, you can't be treated.

    I know what you mean about being worried. I've recently experienced my eye not opening and it is so distressing! I Haven't yet gotten to the bottom of it, I'm seeing neuro again on Monday, see what my recent MRI shows.

    Let us know how the EEG goes and what the diagnosis is when you get it. Take care.

  • Hi thank u 4 ur reply. I have had MRI done 2 check 4 lupus attacking my brain thankfully I don't have this.. Thinking now it could b a functional disorder. Crazy how r body's work isn't it. I hope u get some answers also. Take care and merry Xmas. Xx

  • Hi Ruth so sorry to hear about what's happening to you.

    I am no doctor but what you describe sounds very much like a condition my dad had and it's called myasthenia gravis which starts exactly how you describe. I'm not sure if I have spelt it correctly but please ask to be checked for this too by your doctor's/hospital. It can be scary not knowing what's wrong but please make a note of every symptom, how long it lasts for etc. The doctors may tell you that it's not this condition but there is no harm in asking!!!

    Take good care and please keep me posted on how you are.

    Kitkat74 xx

  • Hi thank u 4 ur reply. I will defs pass that word on to my docs everything helps.

    Thank u and merry Xmas xx

  • Merry Xmas to you too Ruth and everyone on this site. I keep forgetting it's next week. Fibro fog!!!! Xx

  • Sounds very worrying for you,I agree you should be having an mri as well although I'm not a dr.

    It is very hard not to worry and recently I have made the mistake of searching the Internet. Last tues I was diagnosed with lupus and fri I had what they are calling a stroke. I'm not old and have no other risk factors for a stroke. My left arm has been left weak and the arm is awkward. I wasn't really aware that you could get all these neuro things with lupus and although I wasn't too anxious about the lupus diagnosis (my consultant was waiting for me to have another diagnostic criteria!!!),it was expected, I too am very worried about the neuro side of things.

    Take care,I hope your wait isn't too long and they get to the bottom of it. In the mean time keep coming on here,I have found it a very supportive place to be

  • Hi thank u 4 ur reply. I too was treated the 1st time this all happened to me 4 a stroke it wAs scary and not something I thought I'd have to face to 26!! Thankfully the next day a stroke was ruled out. Have they defiantly put urs down as a stroke? Had a MRI an came back clear there thinking now could b a functional disorder but 4 me I haven't a clue what lays ahead or wot exactly is going to happen one day to another. Am the same as u the internet was my 1st stop too. Really hope u get answers as well. Let us no keep in touch.

    Merry Xmas xxx

  • This does sound scary for you and as someone who also has neuro stuff going on just now - mainly in my peripheries - I can relate to your anxieties.

    My youngest son (17) has a close friend with Myesthenia Gravis (sp?). His account of her symptoms are that she suddenly starts sounding drunk with slurring of speech - mainly when she's tired. And her face drops as if she's got a palsy of some kind. She takes some sort of medication for it now and is mostly fine as long as she rests enough. Now they all know what's happening they no longer panic and nor does she. The unknown is the scariest thing I guess. I've got a name for mine now but not a cause yet - MRI of brain and tests to be done after Christmas.

    I don't like being told not to worry - worry is my middle name and that's not about to change! The Internet and knowing more has helped me to take a bit more control of things. Take care. Twitchy

  • Hi thank u 4 ur reply. It is 100% scary not just 4 me but the people around me. I've had my MRI and all back clear which is a relief as it could have been the worse. Getting admitted now in the new year just hoping I'll b able to enjoy my Christmas with my partner and family.

    Hope u get the answers needed soon. Take care and merry Christmas xx

  • If I were you I would get someone to take me to A&E it's not normal to have this, I would want it checked out now I have Hughes syndrome it's also on healthunlocked site, having sticky blood can cause TIA's it sometimes goes with Lupus, the areas on the brain damaged can be very small so my Neurologist thought it was just my age !

    A blood test can diagnose you but, sometimes that doesn't show it up, anyway the treatment would be by anticoagulants

    Please go as soon as possible

  • Thank you for your reply I will defs be passing this information onto my doctors.

    Take care and merry Christmas xx

  • Hi Ruth,

    I experienced the same three years ago & been poorly ever since.

    They hospitalised me for several days for observation in Neuro, but was a waste of time tbh. I came out feeling awful but with improved mobility.

    Had lots of MRI's, nothing. They refused to test spinal fluid & gp can't order. My episode was like a mini stroke.

    Now I have intermittent weakness, alot of gland problems, pain, tingling, vision variation, skin issues, chest tightness and more. Can't remember last 'I feel fine day'.

    My gp is fab & keeps testing, but the brick wall is Consultants as I was diagnosed CFS/ME/FM & they want to stick to that, even though not provable & clinic said many symptoms over & above.

    Neurologist will take you down the 'somatic' route if they cannot find the problem quickly. Tried this with me but said 'no I have provable medical stuff that is not conducive with somatic'.

    It is worrying which doesn't help but impossible not to. Worrying is part of everyday for me ):.

    Pm me if you'd like to.

    Take care x

  • Thank you so much 4 ur reply. You have had a very hard time by the sounds of it. Things are so crap and not being able to worry just doesn't happen. My gp isn't all that good scared to even give me anything my neuro doc is great but I ended up going private 4 it, so am paying suppose he has to be lol! Sometimes I just have to laugh about it all or am gonna have a breakdown suppose you no this all to well.

    Take care and merry Christmas xx

  • Please look at the Hughes syndrome web site a lot of people on there have had problems with neurologists.

    The symptoms you are having could be of a stroke even if it is a mild one TIA it's important to have it checked out today

  • You need to get someone to take you to a&e when this is happening. Please don't wait for new year. Also insist on being tested for Hughes/APS. They have a forum on HealthUnlocked, and a webpage. It could also be Mysthaenia gravis. Best wishes.

  • Hi Ruth,

    Has your doctor tested you for Bell's p

  • Hi Ruth,

    Has your doctor not tested you for Bell's Palsy?

  • Ask your doc about Bell's palsy. It's treatable.

You may also like...