Just wondering if anyone else experienced issues with eyes/eyelids?
I have had many neurological symptoms, many of which have reduced.
Im on gluten free diet, 10 weekly injections, and self inject weekly now as was not given more frequently by surgery. Plus iron, folic acid
however I’m having weird issues with my eyes/ eyelids including feeling like they don’t move properly and frequent blinking which I’d hard to control. It’s quite odd and upsetting.
I’ve been to opticians no issues there other than reading glasses
Anyone suffer something similar?
thanking you all in advance. I frequently join this site as so helpful in this b12 wilderness.
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Dancers1
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Yes I experienced problems with my eyelids flickering. This is one of the signs I use to know when I need to take more B12. When the flickering comes back, I know I need more B12.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
thank you so much sleepy bunny. No not been referred to neurologist. Just finding own path. The eye blinking thing has been new symptom and worrying. So relieved to hear others faced similar. Thank you again.
Way back at the beginning, I used to get "shivery eyes" which felt like rapid-eye-movement which I couldn't control, but only for a few seconds. Could also feel it happening at night when I shut my eyes.
I think this was just tired muscles - and this soon went when having frequent regular B12 injections. Muscles then often tired all over the place: neck from holding head up, forearms and calves - but luckily these didn't shiver in protest !
thank you Cheryl Claire. That’s a good description of it. Goes on for more than seconds but seems worse when tired. Hopefully will disappear soon. Thank you once again.
It's funny - you forget the symptoms that have gone completely, unless someone raises a question here. It took me quite a long time to get better, and not a straight line upward - plenty of "blips" along the way. Once on a frequency that actually made a difference, it still took a few months until people started noticing : family and friends, employers, co-workers, but more crucially, nurses and GP (who was almost as delighted as me!)
Having said that, I'm still a work in progress.
Never give up - get as much of your former self back as you possibly can !
Things are moving forward, but as you say, blips like this along the way.
About 2 years ago I had lots of things, passed out, double vision, blurred vision, migraines daily, overwhelming fatigue, tinnitus, balance and coordination, cramps, and weight loss. Not a full list. Some have gone and some reduced but, as you say, people starting to notice. Whilst still on a journey, I don’t want to go back there! I feel for those still struggling to get through.
Nothing more scarey than the thought of "going back there". This is what many doctors will never understand - until they stop underestimating the impact this deficiency has on all aspects of a patient's life.
Self-injection of online supplies of B12, without any training, into the thigh with a 30mm needle every other day, by comparison, becomes as nothing.
Until they do finally get it, they will continue to see this as "addiction", which focuses their attention totally in the opposite direction.
Problem is it's not always easy to recognise a blip when going through one. Always that fear of deterioration that cannot be reversed.
I once had a lovely optician who understood about B12 deficiency and what damage it can do. He showed me on his screen some examples of that (back of the eye), and showed me what he was looking for - and then showed me that I was okay. Recorded the deficiency and test, told me to come back any time for a recheck if worried.
The only problem but its a big one is dermatitis type symptoms on my eyelis. It's really itchy and sometimes red and sore and unsightly. I don't know whether this is allergy or B12 deficiency as I have been suffering from this way before I knew of the test showing B12 deifciency. Would like to know whether anyone else has this. Dancers1 I am sorry you have this, I hope it resolves.
I’ve had eye problems but have so many AI conditions, it’s hard to know what causes what. I find using eye drops thru the day and oily ointment at night helps. They are preservative free and can be used as required. Also, I’m knocking on a bit so some of it is age related too. I hope you find a solution soon.
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