Hi thank you all so much for all the support and advice I have received from you all regarding my truly awful GP (hanging up on me 5 times over the course of an hour whilst having a stroke as he was adamant it was trigeminal neuralgia
I have indeed now had the stroke confirmed by the Consultant Neuro-ophthalmologist
but unfortunately, I am left with Quadrantanopia in both eyes A quarter vision loss in both eyes and I am looking at losing my driving license for good
Has anyone had any experience of this? Did it get better or stay the same?
Thank you in advance
Jane
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mully
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Hi The stroke happened about 4 weeks ago now I am still a patient at the stroke clinic I am in Cornwall in the UK I have a left occipitoparietal lesion caused by the stroke which has resulted in a quarter of sight loss in each eye I have read different things Some say the sight can recover after 6mths others say it is permanent
I was told mine would not return however it did. I can tell there are deficits, especially at dusk or on dull days and when I’m tired, however it was enough to get through the driving test. I’d advise you practise the field tests that they test you on because you can retrain the brain. There are many websites that you can find to do it and also generally stimulate your brain with brain games. My neurologist was shocked at my progress so I would never say never on it not coming back but the sooner you start remapping the better to give yourself a chance.
I do hope you have made a complaint about the GP as that behaviour is not acceptable for any reason and he needs to learn a lesson so that it doesn’t happen to anyone else. I was told I was having a migraine by the paramedics which influenced the Emergency physicians treatment at the hospital and delayed vital decisions. I get very cross when I see advertising of awareness of strokes which only emphasises drooping of the mouth, failure to lift arms and slurred speech. They never mention loss of sight or headache. If they did it could save someone’s sight or life!
I had difficulty getting a diagnosis. On my first trip to the ER during what an MRI would later confirm was one of many strokes, I overheard the ER doc telling the ambulance workers that I had fooled them into thinking I had a stroke because I wanted attention. One stroke caused a loss of vision --not nearly as bad as yours, but still, a visual field test revealed substantial issues. I could see shapes, so, driving was OK. I once saw what I thought was a person with a boa around the neck, standing on one foot on a motorcycle. No, it was not that, but it was a vehicle in the road and I steered around it. When reading my mind would anticipate the word I expected, but not always accurate. Example: I would read " in the field was a horse," when the sentence actually was "in the field was a house."
A follow up visual field test one year after diagnosis and warfarin my vision had improved substantially: still one ' hole' in my retina, but not big. My ophthalmologist was amazed and asked, " So. Do you read every day? Do you work puzzles and try to learn new things? Are you physically active? You must be for all those things help your nerves re-grow and repair. "
--In some ways I have returned to the past. Since going gluten free in 2004, all the blood tests for APS are negative. Even though they were positive for years--YEARS--before diagnosis. My competant local hematologist retired. His replacement knew little about APS. My GP monitored me for a couple of years. Then, with covid symptoms coming in with a strong resemblance to APS, I left that GP in search of another who, again, would know more than I. And I found him! He agrees that Since we dont really know if my APS is gone for good, or how covid might effect APS, that I must stay on warfarin. The new doc also aggressively referred me to a podiatrist for plantar fasciitis and a toenail fungus that had been ignored for years, and a gastro-enterologist to insure that all those years of Celiac have not prepped me for cancer. He also referred me to a hematologist, who, on my first and only appointment, became angry, raised his voice abd accused me of gaslighting him and other docs as all my APS markers are negative and have been so for years. My new GP apologized and found me another hematologist.
Those sort of foot problems are prevalent with a slow Thyroid, mine were like that until I did private and detailed tests which showed I had Hypothyroidism, now gone. MaryF
Be aware that if they just do the TSH it may not be accurate enough, I did and do a wide variety of tests, to show antibodies etc and the relevant levels. MaryF
Hi Thank you for your replies I have an appointment in 6wks to see the consultant Neuro ophthalmologist and hopefully, he can explain a little more what I am to expect Gina D thank you for making me laugh You described a situation with your eyesight very similar to mine I was feeling that perhaps I was having a mental breakdown as I am seeing things that I know cannot possibly be accurate plus my brain seems to have developed predictive text (but it is very bad at it ) filling in words not only when I am reading but most embarrassingly when I am talking I sincerely hope this gets better as I am afraid to open my mouth for fear of what I am going to say HaHa
I hope your appointment goes really well, and that you come back and tell us about it, reading Gina's account is hopeful for some improvement for you in the future. Good on you for your sense of humour. MaryF
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Big Thanks to MaryF AND Kate. Finally a referral to St Thomas'!!!!
Just diagnosed with APS
iNR
Urgent help needed
confusion about diagnosis
