Hi all can anyone relate to some of the symptoms I have been experiencing over the last year please? I was diagnosed with fibromyalgia last September which I remain unconvinced but bloods always clear of antibodies. In the past year my trigeminal neuralgia attacks have increased from a few times a year with several attacks in a few days, to every four weeks to every week. I have also experienced a very odd 'funny turn' which happened all of a sudden when I sat down to make a start on my assignment for Uni. My sight became uncontrollably jumpy, flickering, my sight was so affected that it was almost as though my eyes were constantly blinking. My hearing was also affected and my two friends conversation sounded like they were whispering, I felt as if vibrations were travelling through my veins, and although I didn't attempt to speak during the five or so minutes this was happening, I'm not sure if I even could have. I was also told last year that the constant double vision whenever I try to focus on anything is caused by my brains inability to fuse the to images from both eyes due to misalignment, this condition cannot be corrected with surgery due to too much scar tissue and the only solution I have been left with after unsuccessful prism lens glasses, is to completely occlude one pupil in order to see everything in single vision.
Please can anyone tell me I'm not alone.
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Queencara78
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I am so sorry this is happening to you. The only thing I can sort of relate to is the vision thing. Prisms help but not totally. Some times I can see very clearly, but most of the time not... and now cataracts are developing (I'm 63 yrs old).... I have fibromyalgia and diagnosed with MCTD with pending lupus.
Hi Mezzoishere, Thank you for responding, can you tell me do you have a history of strabismus (squint)? because I do but only in my left eye, the right eye is affected now and although squint wasn't present in this eye, it was operated on at the age of ten in an attempt to correct my left eye.
No... I do not have that. I am just very nearsighted with astigmatism that was blamed on the blurry vision which then a doctor explained was really double vision because my eye muscles were not cooperating with each other. This started about 16 years ago and I had to first quit wearing contact lenses. It sounds like you have a much more serious condition.
I had to look up the other that you mentioned on the face... and I will at times get stabbing on my scalp or legs but never long enough to think about telling the doctor.
Back to eyes... I have had a jumpy eye before that is so irritating and was told it was because my eyes were tired....
Ah okay, I am longsighted, but am convinced that this sudden inability of my brain to fuse the two images anymore is down to a problem with the optic nerve. I am finally seeing another neurologist next week after months of nagging my GP because after extensive research on my part I found that the condition she had originally referred me to in 2015 was temporomandibular joint disorder and nothing like the different short sharp pains I had described (trigeminal neuralgia). Hopefully they will finally send me for an MRI to investigate these increasing attacks because from what I have found the condition is rarely diagnosed under the age of 50.
I would recommend that you ask your GP for neurology referral too?
No, I am afraid nothing was ruled out and I have been suspicious about whether MS might be my true diagnosis, however, due to my GP mistaking the type of pain I have been experiencing as temporomandibular joint disorder, which consists of completely different type of pain but affects almost the same area of the face as trigeminal neuralgia but not the severe short sharp stabbing like pains that literally make me move in a certain way to try to suppress it.
The neurologist I saw in September 2015 hadn't accessed the recent report regarding the inability of my brain to focus two images into one anymore, because it was placed in a different file and because he was a consultant from outside of my hospital borough just helping with the backlog of appointments and not familiar with the system to know another file to access.
He had considered demyelination but said there wasn't enough evidence at that time to refer for further investigations. I have since had to persist with asking my GP to refer my to neurology again as I am not convinced that fibromyalgia is the sole diagnosis if at all.
i think it is better to consult neurologist to rule out demylinating diseases by spinal tape , MRI with contrast , or even blood analysis for neuromylitis optica antibodies !
Thanks for a very interesting & helpful thread, QC & mezzois. Just wish you weren't having to cope with all this
have a somewhat similar probs to you both & do find prisms help quite a bit. But my version of this is not as bad, I think. And so far no TM issues (but plenty of autoimmune ear issues). For what it's worth, my version of these eye issues started in childhood...eye medics tell me that my ehlers danlos hypermobility affects my eyes too, which goes sime way to explaining how peculiar they are. Otherwise my main eye probs are to go with early onset sjogrens (Blepharitis, MBG dysfunction, Punctate Keratoconjunctivitis Sicca, Periorbital oedema & rash). I attend NHS eye clinic annually for thorough check ups, and also see a private othalmologist with a special interest in immune dysfunction cases
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