A out-of-hours GP suspected I may have MG and I went to see an ophthalmologist yesterday. He ran the usual tests - visual fields and eye drops to dilate pupils etc.
He found nothing wrong with my eyes.
I asked, if that's the case what on earth is causing the double vision and ptosis, he shrugged his shoulders and laughed at me, and repeated he couldn't find anything wrong with my eyes.
I'm struggling to work - need to drive for my job but my eyes make this unsafe and GP told me I wouldn't be covered by my insurance if I drove during a bout but it can happened quite suddenly.
Any suggestions of what I should try next? My usual GP seems reluctant to help me join the dots with all my problems, she seems to be putting it all down to psychological issues, or my previous ME diagnosis. Can't get across how different what is happening to me now feels from the ME symptoms.
Thanks in advance for any help!!
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mylady77
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Hi. Sorry you had such a discouraging visit with the eye doctor. I also have had eye issues but always had fine check ups with my eyes. These problems can also be neurological that may not show up on such tests. Have you seen a neurologist yet? That may be your next step.
It's actually pretty normal to feel that way I think. Early on in my illness I saw my first rheumatologist and he ran a huge list of blood tests. They all came back normal even though i was horribly sick. I told my husband I had never been so depressed to have "nothing" wrong with me. Hang in there. Sadly it often takes a few years for some autoimmune illnesses to be diagnosed. That doesn't mean you can't find help sooner though. It's just not as simple to pinpoint as some other illnesses. Please keep us posted.
No joy with my GP - think it might be time to change.
Unhelpfully the ophthalmologist (not a neuro-ophthalmologist) categorically states in his letter that he doesn't suspect MG.
I find this odd. He did no specific tests for MG (I've had a good read about it since) and when he asked me to follow the pen, or whatever it was, it went double for me at an early point, as it always does, but he didn't ask whether this was happening so I didn't say anything.
Also, I mentioned diplopia at the beginning of the consultation and he asked me whether I ever experienced this right at the end, and when I confirmed it he didn't say anything.
GP says it's all the ME/CFS. Perhaps she's right but my gut instinct is no, something else is happening now. I've had ME/CFS for years and this is so different.
Mentioned breathing problems in the humid weather we've been experiencing but again the GP said it was the ME/CFS.
My first problem was difficulty chewing and one side of face slightly numb with drooping eye one side of face. My neurologist sent me off for tests which immediately came back positive. The tests were with a sort of electrical machine. Where do you live? My neurologist is at Chelsea & Westminster hospital in London.
I've started choking on my food and drink, very occasionally. I had an incident with a piece of cucumber on Friday and have been poorly with flu like symptoms ever since. My mouth feels sluggish and my words slightly slurred sometimes.
I too have the drooping at one side - it looks like I've had a stroke. My daughter does pirate impressions when it happens to make me laugh.
Desperate for some answers and a chance to figure out how to help myself.
me too and my daughter and I laugh to ease the upset I and she feels for me .I was told by local hospital they dont know enough about mg to diagnose it but do nothing to help by way of someone who might. no one has interest they say we see your unwell but dont have the answers as bloods show nothing or nerve test. why they wont try the use test is beyond me as it surely answers something.i seem to have levelled off , still symptoms persist but had over 3 years from hell with thyroid ,skin ,heart,, breathing ,muscle problems all with no answers.
hope we both find some answers I would travel to ends of earth to find that
Read your post and had to respond as I had a very similar experience with the opthalmologist recently so really sympathise with you!
The optician saw my nystagmus, the gp saw my double vision, but the opthalmologist told me everyone get nystagmus when looking sideways (wtf!!)....unfortunately i was so surprised by her response that i said nothing, even when, just like you, i got double vision during the test, but she never asked. The consultant I then saw straight after said nothing wrong with my eyes (and his letter to my gp states no double vision or nystagmus evident, despite the fact that the dvla have now taken away my driving license due to double vision!). I asked him at the time what I should do next, and he told me his job was to look for eye disease, and my problems were not his area?! He did however tell me to go back to the neurologist to investigate it, as it was their area.
My neurologist was pants, and uninterested (she has popped me in her fnd bucket, and has now discharged me, despite me explaining how the functional symptoms have gone, and everything now fits a very different pattern...she stopped listening), so I asked for a second opinion neurologist in a different hospital trust.
Long story short i saw him monday, and he was amazing...listening to everything and being really thorough, and agreeing with my myasthenia theory...it's like night and day compared to other specialists seen so far, and I am booked for the first tests this weekend... So my point is that, yes, get your neurology referral sorted in the first instance, but don't stop there if they don't listen. Ask for second, even third opinion if you don't feel like they are hearing you. I really can't get over the difference of finally finding a specialist who really cares....i could have hugged him :D! Kaz xxx
Thanks so mUch for your response. Gives me hope that with a bit of persistence I might actually get some help!
I'm struggling with my GP at the moment. Bloods all came back relatively fine, a few minor issues. My symptoms are pretty diverse and she doesn't know who to refer me to - neurologist, rheumatologist or endocrinologist...
Have to perform repetitive muscle movement tasks for two weeks, keep a diary of how I get on and go back in two weeks.
So many lists and diaries....
Anyway, I'll keep on keeping on and hope for a break through soon-ish.
sorry, haven't been on here for a while. hope you have managed to get another referral and are on the road to trying to get somewhere with a diagnosis? xxx
Hi. Bad to hear that. However I think you may have multiple sclerosis. It's a neurological disorder and often myasthenia Gravis is a symptom of multiple sclerosis. Same as choking and loss of vision. Keep me updated. I'm quite curious.
Thanks Chris. I was surprised to see a comment on this old post.
I can't say I've made any progress since I originally asked for help.
A locum GP suspected MS as well, as I now have numbness and strange sensations in my left hand, arm and leg - the same side as the facial drooping. I've had a couple of MRIs (a very shaky mobile unit and no contrast dye) which didn't show anything.
Debilitating headaches and quite severe gut problems have developed since as well.
Obviously with the current situation I'm feeling relatively fortunate and reluctant to request further investigations from an over burdened NHS. I hope to try again once the pandemic is under control.
I can not get a referal to a neurologist - despite one GP seeing the facial drooping when I walked into her office and saying 'Have you seen a neurologist for that?' - I think when she saw ME on my notes she had second thoughts.
I feel like my notes must have something in code which warns them all I'm a crank!
Sorry you’re having a hard time I can totally relate, I was fobbed off with Bell’s palsy initially but had breathing muscle problems too and then depression, fibro, fnd and an urgent referral had taken over a year and still no face to face appointment and a go I can’t won’t go to because of the smirking attitude. I also have been told by neurologist that he is sure I have erythromelalgia but I need a dermatologist to confirm this 🤷♀️My eye tests were fine except they said very dry and I don’t blink much. I’ve seen a rheumy who says bloods ok , yet intermittently ( short lived reprieve) I feel awful , for two years and counting. I’m saddened and angry at the way I’ve been treated but just want answers. So do you so don’t give up try and find another avenue to go down but we deserve better to find help and hopefully improve our lives and health.
Don’t accept the psychological issues if you don’t feel it fits, it seems to be a common diversion and of no help at all. Good luck follow your instincts 🙏👍
I have been 6 years with undiagnosed ptosis and following the ptosis so systemically ill for a few years until high dose steroids alleviated some not ptosis weakness etc. rheumatology dismissed me with fibro, dermy and neurologist basically said it was psychiatric despite previous neurologist suspecting disease, and other docs. today I was again seen by ophthalmologist for tests and they said its most certainly myasthenia and to see a neuro ophthalmology specialist. I have been gaslighted to the hilt, believe I had a crisis in all this when struggled to breath and so systemically ill. push and push, its finding the right doc to show interest,i asked everyone I saw to refer me to ophthalmology and they wouldn't until optician said he would refer me off his own back. Twice now ophthalmology docs asked why I wasn't sent to them before, but thats for the gaslighters to answer I tried to get referred. my gp also has done nothing to help multiple symptoms.
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