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PMRGCAuk
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Not a drama queen...just need advice!

I will spare the last 4 months of details regarding my GCA trials and tribulations. I am STILL trying to get into my GP so I can get a referral as I am headed to John Hopkins. More important to note is that I am on a very low dose of pred (looonnnngggg story). My blurry vision has escalated. It comes and goes but is definitely worse in the morning. At what point do I take a risk and head to the ER?! Note the word “risk”...how do I prepare to handle ER docs who may or may not be knowledgeable in the world of GCA?

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There are wiser and much more experienced people than me out here, so I will let them advise... I will simply keep you in my thoughts and prayers and hope you get that referral soon, get to JH and get this sorted! ❤️

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Go to the ER straight away Michele and be firm with any doubting Docs, your eyesight is important!!!!

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Not sure you have any choice but to go to the ED if your eyesight is affected and worsening. I do feel for you; it is awful feeling scared and having to persuade people to listen. You never know, the right action may happen. I guess it may add weight that GCA has been mentioned already and go armed with some meaty information, some of which you have flagged up already. Take an advocate with you too.

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Have you tried a optometrist? In the UK they are certainly able to do the tests to see if there are signs of longer term reduced blood flow to the optic nerve - i.e. examining the retina (back of the eye) with the pupil dilated. Probably better than the ER.

As for dealing with the ER docs - cross that bridge when you get there.

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I am not an expert, either. But if I were you, I would drive (or have someone drive me) down to Miami, FL and go to the 2nd floor of Bascom Palmer Eye Institute. 900 NW 17th St, Miami, FL 33136. This is their emergency room. (It does take a while. Come early and be patient.) They have a dept. in the hospital in neuro-ophthalmology. There, these are the type of doctors who handle most of the problems with GCA eyes. It's not just the optic nerve. There are many cranial nerves which take care of the face, ears and eyes. One is the 6th. GCA can give it "palsy." Prednisone can accelerate cataracts. You are in the very south of the US, and it seems as if you have light eyes. You probably have them started and the Pred. makes them grow faster. There are some things called strabismus and diploma. These are "cross eyed" things. The disease can make the muscles of the eyes weak. Maybe the Pred. does as well. There are specialists for helping the muscles. There are cataract specialists. There are retina and macula specialists. Somehow you can get Pathological myopia. This is simply terrible near sightedness. I have a neuro-ophthalmologist at this hospital. At various times he has recommended ALL of these other specialists. They have a brain MRI machine there. My neuro-ophthalmologist has sent me to get MRIs of the brain behind my eyes in the frontal lobe and the cavernous sinus. (Whatever that is.) And yes. There is something weird in the cavernous sinus (and un-related a tumor in the frontal lobe). This place is listed as the finest eye hospital in the world. It's in your back yard. They NEVER think that something is too trivial. They treat all patients--those with money and those without. You can check and determine if they take your insurance. Go on-line. But they take my medicare and my AARP Supplement F. I don't pay anything. Before or after the emergency room you can become a patient there. In fact if they find something, then you will leave with an appt. with a specialist who handles that "thing." They even have offices elsewhere in Florida, but I like the main hospital. They absolutely understand the potential problems with GCA and will look at everything. I am so grateful for them. I've always been near sighted, but I went to -8.25 diapters (pathological myopia). Now I see 20/20 and the cross eye problem is under control. No bleeding on my macula...... I can drive again. I can manage the ground when I walk. They will not think that you are overreacting. Johns Hopkins also has a neuro-Ophthalmology dept. These in either place are the special specialists. But you don't have to wait to go to Bascom. Go. You can go even on Sat. and Sun. Tell them that you have GCA (if you do) and they will handle the matter. Good luck.

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Excellent post.

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I’m speechless 😶! I am absolutely amazed with the breadth and depth of your response. After I finish sending my reply, I will do my research. I sincerely thank you for your knowledge and kind efforts😊!

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I am so happy that for once I am able to help! Even if you have not been diagnosed with GCA tell them about the Pred. and whatever happened that you were told to take it.

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Thanks for sharing such excellent information with the group.

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Asbeck. You are wonderful. I to go to Bascom Palmer for a number of eye issues. Have been using them for many years the one in Palm Beach Gardens it is easier for me since I live in Boynton Beach. I have never seen a neuro-ophthalmologist but I think it is time. I need several eye surgeries but have been putting them off because of the Actemra and the fear of infection. As I reduce the prednisone the eyes actually feel better. I use their serum tears for my dry eyes. I am sure your post will help many many people. Not everyone has our advantage but at least folks will recognize all that can be done.

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2. Micheleinnaples: I also think that you can't just call up and get a doctor's appt. Generally you go to Bascom when your own eye doctor is stumped. He/she refers you. But I'm 99% sure that you can just walk into the emergency room, and they will see you. The Medicaid patients do it all the time. Generally, they do not have eye doctors. People with eye injuries do it all the time. (I do it, but I am a patient at the hospital.) If you walk in I would think about some of the more very recent sudden onset problems when you talk to them.

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Asbeck

Great post. Shortly after I was diagnosed with PMR in June I started having vision problems...seeing double which made driving impossible without an eye patch. I went to 2 eye Drs. at Columbia Presbyterian Hospital in NY and was diagnosed as crossed eyed and sent to an Orthoptist who put prisms on my glasses (right side only). Very scary problem resolved.

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Asbeck - what a superb post. My own situation tumbles into place. 6th Nerve Palsy - yes. I live in France and we do not have anything like the same ophthalmology coverage as is available in the USA, or even the UK. My situation was ignored and now I have lost the central sight in my right eye.

I still get the heads, not migraine, and still have a sort of diplopia - peripheral sight 'mostly' retained in the right eye, so it is an odd diplopia, but had to use prisms, 2 diopters, both eyes. Meant I could drive without having to close one eye ! Now, I don't need the prisms - press on ones. Did an excellent job.

Thank you for your post - pieces of the jigsaw coming together. Ho-Hum. Nowt I can do about it now though. Sigh. Guard the other eye ?

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Wish I could get a plane and go there. I am not being taken seriously about GCA. I had horrific headaches before being put on 10 x 5 mg of pred a day. They are just reducing the Pred until they see if the headaches come back. Some level of pain has come back but I don't know if this is GCA or the fact I am coughing myself stupid with a very bad chest infection. My GP surgery is in a mess and no one has a clue about PMR. Getting conflicting information. Most recent told not to bother with blood tests any more. Our serious health concerns are in the hands of these peope and all they seem to want to do is rush me out the door. EEEk!!!

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I have every intention of staying here in northern Italy. Where I can still see my GP same day - turn up and wait but still same day. Our A&E is also overflowing during the winter with the detritis from the ski slopes - but the bill is sent to the patient's insurance. Then they spend the summer using the beds to do orthopaedic surgery from all over Italy. They do a good offer on bunions and hip replacements...

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Just ask them if they want to be responsible for you losing your eyesight

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Are you in pain?

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Yes, off and on.

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Michele. You should not wait because you can lose your site. The rheumatologist that I use will get you on an high dose of prednisone immediately and probably get you on Actemra if your labs are good. Ft Lauderdale is not terribly far from Naples. You cannot afford to wait. Don’t waste time at Bascolm either. I went to Rand eye hospital and was told I did not have GCA . I had the pain, double vision, sore scalp, headaches, earaches and attacks like angina pain in head. If I listened to them I would of died.

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What is the name of your Rheumy in Ft. Lauderdale?

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