New Here and relieved to have found such a great community

[allwritemel1967]

Hi, I'm new here - just stumbled on the site while trying to figure out something about my sight.

For the last three years I've had awful problems with my eyes which have led to them closing for sometimes up to 17 hours a day! The doctors ignored me until I eventually insisted on being sent to a neurologist (I had a wonderful doctor at the time who has since left my practice. She really understood where I was coming from and was so caring - she referred me to the guy who she trained under.

Long story short, he decided I had "mild" blepharospasm which was making my eyes close for long periods. I was started on botox and it worked like a dream the first time ... then ... disaster! I was on holiday in Disney when my sight disappeared completely - several times. It was only a few minutes but soooooo scary! I was referred to a different neurologist who said, "Nothing is wrong. I can't do anything." I ended up going to see a lovely Irish doctor. She agreed to retry botox ... same thing - wonderful first time, second not so good (actually, dreadful) I was too scared to say anything in case I was left with no treatment so I just said it hadn't worked as well ... This time the first 30 days were HEAVENLY. Full sight until 9 at night ... however: "Sorry, all your problems with your sight are in your mind. There is no medical condition that can cause flashing lights (what about migraine) or sudden loss of vision." This has been going on for months. I found a truly wonderful doctor who argued that SOMETHING is going on - my depth of field is almost none existent. "Nope, no MRI - it's in her mind!"

My friend called me last week and asked if I'd been tested for GCA. Things have moved quickly since then. Went to see the doctor (may God forgive me I was quite rude to him ... nobody listens to me!" He told me to give him a chance ... I went through every symptom and he went quiet ... when I explained that according to the Consultant, there is NO condition which causes sudden vision loss or flashing lights he almost exploded. "What kind of doctor is she? You are presenting with at least 6 symptoms of GCA, even though you are a little young, it CAN happen. I need you to get an eye test URGENTLY (preferably today (I had to wait until yesterday) and have your bloods taken today ... we could only do that on Monday.)

The optician has left me stunned. She said I've been misdiagnosed, am presenting with at least 5 of the 6 main symptoms ... and what are they doing about the extremely badly swollen optic nerve at the back of my eye which is causing me vision problems.

Pardon? Turns out they noticed a swollen optic nerve going back 7 years ago but said nothing to me - didn't even refer me to the hospital! She said if I'd been treated at once my vision may be better than it is. This is very scary. She has referred me for an MRI with instructions to look at the optic nerve. Then she decided to do a depth of field test after I complained that I cannot see through the side of my right eye ... she couldn't believe how many I'd missed on both sides so got me to do it again - and then a third time. I told her I wasn't deliberately not hitting the button but she said that was obvious (and if I was faking I would not be able to replicate it so exactly) - my vision actually disappeared when I was with her.

I am disgusted that nobody thought to run more tests (I didn't know what to ask for). She said that although she's not an expert, unless we get me treated urgently I will lose my sight. Part of me is so angry right now ...

Sorry, I'll shut up! Thanks for reading this long and boring message.

[Hidden]

Hello & Welcome 💐

What you've been through is appalling, if does turn out to be GCA you'll be among friends here very quickly

I don't have GCA, Thank God; but do have PMR plus other issues, so l can't really guide you but others who do, will be along quite quickly l'm sure.

Just wanted to say Hello & hope you get a proper diagnosis very soon.

Best Wishes

Mrs N

[Hidden in reply to Hidden]

Here is the link that SheffieldJane was talking about

pmrgca.co.uk/content/bbc-tr...

[SheffieldJane]

That was not a long and boring message, rather a shocking horror story at the medical ignorance and insensitivity you have been surrounded with. I wish I had the technical skills to link you with Kate Gildert's latest post and link about being on the alert for Giant Cell Arteritis and the latest MRI scan diagnostic tests ( it is on here and was posted a few days ago). Your story highlights the vital importance of being the intelligent patient, being ahead of the game in terms of research and knowledge. I am glad you've landed here.It's where I have learned everything I know about PMR and GCA. Keep us posted on your journey. Good luck and God Bless.

[PMRpro Ambassador in reply to SheffieldJane]

healthunlocked.com/pmrgcauk...

This one you mean SJ?

Technical skills: at the top of this page, next the PMRGCAUK logo, click on Posts. That brings up a page you can scroll through and see all the posts that have been made. Bring up the one you want on screen (I do this all in a new window on the computer but not sure what you would do on a phone) and then copy and paste the address as I have done.

[DorsetLady PMRGCAuk volunteer]

Hi allwritemel1967,

Wow, what a tale! If it does turn out to be GCA, then all I can say is - you are very lucky to still have your sight. Many of us have had similar symptoms for much less time, and weren't so fortunate.

Please keep us informed of progress, and good luck.

[allwritemel1967]

Thanks everyone! What a lovely group! I will keep you all posted for sure. I received two calls this morning - one telling me to get myself to the hospital this afternoon for some biopsies or something. Really appreciate all of your concerns. XX

[Hidden]

Good Luck 🍀

[PMRpro Ambassador]

I'm sitting slightly mind-boggled about any optician who has seen signs of AION (Anterior ischemic optic neuropathy) and who hasn't sent the patient to an eye specialist for investigation - at any age since there are other things that can cause it.

Mine would have seen it, made a phone call to the local hospital saying he was sending an emergency, written a letter with the details of what he had found and pressed it in my sweaty little paw. He wouldn't have let me drive - and if necessary would have called an ambulance to transport me.

And amaurosis fugax - the fleeting loss of sight - is not only a herald of possible GCA but can be a symptom of stroke or TIA as well as other things. It is NEVER normal.

I think you must have had the full gamut of idiots in your time!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Unfortunately there's plenty to go round!

[allwritemel1967 in reply to PMRpro]

I agree - thank God for the three specialists this week - my new doctor, the optician and the wonderful Mr Lee who has been pressurising my consultant saying something was wrong for MONTHS. I'm furious with my consultant and have asked for a referral to my nan's specialist (may not happen because he is retiring). I have lost confidence in the medical profession over this. My consultant was so convinced it was in my mind that she sent me to a psychiatrist AND a neuropsychiatrist who laughed her out of the room - they wrote and told her that, after a full and in-depth examination, there was nothing wrong with me. I was discharged. It may be that she hasn't heard of GCA (HIGHLY unlikely) or simply not put the pieces of the jigsaw together - but either way it's cruel to be so ... dismissive of the patient.

I had a fall 12 years ago where I fell down every single stair in the house without hitting a single one! My doctor said I must have been carried down because I should have been killed. I smashed my head at the bottom of the stairs and broke my arm in 4 places - completely shattering my wrist. My head was bleeding profusely but they just glued it back into place AND DID NOT X-RAY IT! When I told my doctor this on Friday he nearly spat his drink out - the FIRST thing he would have done was an MRI and THEN try to save my arm, apparently - he said that this may have been caused as a direct result of that fall. I have very bad double vision at the moment and my eyes are spasming and driving me insane. Now my consultant is saying she may not be willing to treat me next week because I've "gone against her advice" and asked for a second opinion. Sorry, but if I have double vision, sudden sight loss, pain in my temples, headaches and more - there IS something wrong. I don't regret asking for help even if I have pushed the consultant's nose out of joint!

Literally just this second had a call from the hospital - they want to see me on Friday at 2.15 as an "emergency" appointment. Sadly it's unlikely to be Dr Lee that I see. I'll keep you posted.

[PMRpro Ambassador in reply to allwritemel1967]

Where are you?

[allwritemel1967 in reply to PMRpro]

Liverpool, England

[PMRpro Ambassador in reply to allwritemel1967]

There is a NW charity who may be useful to you:

pmrgcasupport.co.uk/

[piglette in reply to allwritemel1967]

Are they offering you steroids for your symptoms? I cannot believe what you have been through due to incompetence of some members of the medical profession.

[allwritemel1967 in reply to piglette]

No, spoke to the doctor today and he said he cannot start me on steroids until he has all the test results back ... why not? Why can they not at least start me on a LOW dose of steroids?! If I lose my sight because of them I will feel like suing them. I was having my dinner when I got a call from the doctors telling me to call them back urgently - they should have called the landline - the surgery is now closed! You watch them call me at 8 or 9 in the morning and wake me up tomorrow! Because I sleep badly (thanks to the pain) I don't get up until at least 10.30 ...

[PMRpro Ambassador in reply to allwritemel1967]

At least one of the guidelines say there is no justification in withholding pred until all tests are done if the patient's sight is at risk. It is one thing with PMR - it doesn't do anything particularly nasty. GCA is another matter altogether.

I've given you the link for the NW charity - maybe they can help with a good recommendation.

[allwritemel1967 in reply to PMRpro]

Thank you X

[piglette in reply to allwritemel1967]

I do hope you can be given steroids soon, they should really relieve a lot of the pain.

[altywhite in reply to allwritemel1967]

This is an incredible story and not in a good way!!! I have temporal arteritis and started with really bad headaches every morning, developed jaw ache and was very head sore. I had had a couple of nasty viral infections a few weeks before. So because of this and the 'flu like' symptoms..which was the only way I could describe how I was feeling...and a history of asthma, I was treated for a couple of weeks as a bad sinusitis. Antibitics, steam inhalers etc. Then I saw a locum....he wanted to try something.....he said it may not work but we would know very quickly if it was going to. He put me on 40 mg Prednisolone for a week. I didn't need a week...the next morning I had no headache!! I just couldn't believe how differently I felt. My own GP then stepped up and referred me to a rheumatologist. Of course, by the time the appointment came through it was too late to do a biopsy.....but so started my journey.

My point being.....rather long winded I know..sorry.....is that you CAN be started on steroids without test results if GCA is suspected.

Good luck

[dinhal]

This was so sad. To have to go through this bs by the people who we have to go to for help is really maddening and dangerous. Good luck now.

My dr says I don't have GCA because you lose your sight with it.

From what I have read, that is not always so.

I do have PMR and have been on prednisone for three weeks.

I have had stabbing headaches on each side of my head for awhile now.

The PA could see my distended artery.

I also had a strange thing happen yesterday at my hair salon.

She was putting color on and it was ice cold. When I said that, she said it was the same as always, room temp. I've had it before and never had this happen before.

It felt like it had been in a freezer.

The prednisone has helped the terrible pain I was in but I am so tired and have no energy.

I also get horrible pain in my leg so it buckles.

I don't know if this is part of this or related to back and hip arthritis.

I had spinal surgery ten years ago.

At least I can dress myself and drive again. I am happy for this but I just want to feel,better in general.

Sound familiar ?

Thanks for listening.

M

R

[PMRpro Ambassador in reply to dinhal]

I really think you need a new doctor. Mercifully not all patients with GCA lose their sight - but some 2-3000 per year in the UK alone do. I don't know the figure for the USA.

Yes, you can go blind with GCA. But there is often a long period beforehand - less than a quarter of patients who do suffer sight loss do so without warning - and when you do go blind it is because of your doctor's failure to appreciate you were ill and diagnose correctly. If he doesn't know - he should send you to someone who does.

dailymail.co.uk/health/arti...

[allwritemel1967 in reply to PMRpro]

Thanks ... just returned from yet another hospital visit. Sadly I saw my consultant who was furious I'd returned. "I've told you it's blepharospasm" ... Really? Yes, you have - but that does NOT cause the other symptoms ... As soon as I mentioned GCA she said, "You've not got it." Why not? "You're too young. Cancel your doctor's appointment. It's pointless going. All this is in your mind." She didn't even test me! I told her about the swelling on my eyes, the lack of peripheral vision, double vision, sore tongue (oh, you must be biting it without knowing), sudden sight loss (no condition on earth causes that - I think it was you who gave me the name for it - that stunned her!), onset of BLINDING headaches - including terrible pain in my temples, dry mouth (you're obviously thirsty), flashing lights, and even the fact that it hurts to brush my hair. (How many more times, that has nothing to do with anything. The main reason for headaches at your age is ... just headaches. You THINK you have flashing lights!" AAAAAARGH! When I called the doctor and told him what she'd said, he asked what about PMR then? He overruled her and told me to keep my appointment with him. She was just about to cancel my botox but I seriously think I would have slapped her so she allowed it to be done very reluctantly. This is just a nightmare. She said if I was over 65 she would consider it a possibility ... I pointed out to her that the guidelines for things like that are just that - GUIDELINES! It's not impossible to get something younger (or older) than the experts expect but she completely dismissed me! I'm so frustrated. Luckily, Dr Colin has promised not to give up ... even if, by a miracle (his words) it is not GCA it IS something. When I go on Thursday I'm going to ask for steroids anyway and see what happens.

Incidentally, when she examined my eye she said, "You've got hundreds of tiny cuts on your eye ..." she had no idea what was causing it but said I wasn't putting the drops in (I have been doing it religiously). She asked Mum to do it for me ("in case she's messing it up"). Why oh why could I not have seen the lovely doctor who said he'd see me in March?!

Thanks for all your support everyone XX

[PMRpro Ambassador in reply to allwritemel1967]

How old are you? Have you said? The guidelines are "over 50" for a start. Have been since 2010:

rheumatology.org.uk/include...

And there is a documented case in the UK of a 37-year old man - he had died of a stroke and the GCA was found at autopsy.

She is ignorant and rude - and incompetent. I would be contacting whoever it is one uses to submit an official complaint. She needs stopping before she lets someone go blind. And her patient relationship skills are appalling.

[allwritemel1967 in reply to PMRpro]

I'm 50 in a few weeks. I will certainly be putting in a complaint. She's also overruling the lovely doctor who works under her. Don't worry, I will be putting in a complaint!

[Hidden in reply to allwritemel1967]

Mel, this an appalling way to be treated & I'm afraid it really needs a formal complaint. Did you go into the Consult on your own? Is this person a Consultant? Or part of the Team, such as Registrar?

Mrs N

PS How old are you?

I note you live in Liverpool so your GP has plenty of options to send you elsewhere & you are well within your rights to have another opinion. 🍀

[allwritemel1967 in reply to Hidden]

I'm 50 in a few weeks. The way I got referred to the consultant was weird. I'd already had trouble with one neurologist who threw his dummy out of the pram because MY DOCTOR was concerned by the fact that my hip kept buckling and referred me to another specialist. He felt his professional ethics were being compromised. Suddenly all my treatment was cancelled for a year. The new guy was very nice and at least gave me an MRI ... clear ... only it wasn't! There were apparently two problems with it that nobody saw (no pun intended) - a problem with my basal gland and my optic nerve was badly swollen. They took a glance at it and said, "It's fine - discharge!" A few months later I was having all the problems I am now (it's got worse and the pain in my temple keeps me awake now) and I needed a letter from the hospital so I was referred to this consultant. She refused to give me the letter but DID say she would try botox again for the blepharospasm. Hmmmm ... since then, she's kind of taken over everything. She doesn't even want to do the injections for me because she doesn't think I need them ... without them my eyes are closed for long hours. I was lucky enough to see a doctor who worked under her and he KNEW something was wrong and begged for a second MRI ... she refused. I had to go back to see him on February 3rd because I was having major problems ... he said he wants to see me in clinic in March ... we'll see! Neither my doctor or I are saying that I don't have blepharospasm - I know I do - but something else is definitely going on. As my GP said, you don't have double vision for no reason and there is always a reason if your sight disappears for a short time. It's not normal! He has agreed to stand by me and help me get the answers I need as long as he is at the surgery. He's pretty convinced of GCA too!

[allwritemel1967]

Cam\t see to figure out how to post so I hope this is OK ... I went to my doctor yesterday, the lovely Dr Colin. He is so helpful and explained that I have definitely NOT got GCA ... apparently my reading is 1 and it should be between 5 and 10 ... Now he's said that, I'm happier. However, he is concerned about my PMR reading. He would have expected, he said, that I would have the same reading but I don't - it's come out as 5 ... he also said blood test is not 100% conclusive but with my symptoms he will keep an open mind and send me for a few more blood tests to see what happens with it. I'm 50 next Friday so he will check me in about 3 weeks ... can't see there will be much difference by then but you never know. I asked about Prednisolone (apologies if I've spelled that wrong) and he explained he's seriously considering it but needs to gather the evidence that it will work for me! Hmmm ... Just have to trust him, I guess. He's referred me back to the hospital over my eyesight and the fact that my vision disappears a few times a week now (despite what the consultant says). She will throw a hissy fit when she finds out but he said that if she has an issue she must speak to him, not take it out on me, which she usually does. It's HIS decision to send me to ophthalmology, not mine. I'm quite scared of this consultant - she's very abrupt and NEVER communicates her thoughts (except to say it's in my mind!) He promised not to give in until he discovers the root cause of what's going on. I challenged him a couple of times, asked loads of questions and he had no problems ... he was alarmed when my hip collapsed when I stood up and said that could be indicative of the PMR in itself! So frustrated but at least he's listening to me.

[PMRpro Ambassador in reply to allwritemel1967]

I'm very sorry - but I am totally confused! I do hope he is right though.

There is no "PMR reading" and it cannot be said someone "definitely does not have GCA" on the basis of a blood test. Up to 20% of patients with PMR or GCA may have normal blood levels of ESR and CRP - which are anyway merely very general indicators of inflammation. They are the only blood tests done with regard to PMR and GCA - other blood tests are to look for other possible diagnoses.

But do please go somewhere if your vision goes again - that is ABSOLUTELY not normal!

[allwritemel1967 in reply to PMRpro]

Thank you so much for your unstinting support! I think my consultant just hopes I'll give up and go away. I won't! Thank you, too, for the information in your reply. You're so helpful! XX

[PMRpro Ambassador in reply to allwritemel1967]

I have to say - I would! You can't find anyone significantly worse as a healthCARE professional!

[allwritemel1967 in reply to PMRpro]

I know - my thoughts exactly - she's the coldest doctor I've ever seen! She's just waiting for an excuse to stop my botox for my blepharospasm. I look really silly at the moment because most of the time my left eye is closed and my right is open! I look like I'm permanently winking. I have told the doctor that under no circumstances do I want to be referred back to her ... we'll see!

[PMRpro Ambassador in reply to allwritemel1967]

Have you put in a complaint via PALS at the hospital? I would.

[allwritemel1967]

Yes, I did put a complaint in ... I'm now rarely able to get on the computer (can't see enough). Can't go out unaccompanied either - my eyes close or my vision goes, as happened last week when I was with my partner - one minute I had sight , the next nothing was there. I was SO SCARED. Without thinking, he continued to walk at a speed of knots and suddenly turned me to the left. I had to (not so gently, if I'm honest) point out that when this happens (more and more frequently) he can't just turn - he needs to warn me - especially if there are obstacles like steps or something very near me (I banged my arm hard on a bollard because I didn't know it was there) - that went on for nearly an hour. When we called my doctor in a panic she said not to worry, it would return! I've almost forgotten what some people look like because my eyes are closed for such long periods - I've not "seen" my friend in almost 3 months, despite the fact she has been down almost every week because of this issue! A few people have a bad habit (trying to help, I guess) of just grabbing me (sometimes not even saying who it is) and assuming they know where I want to go - recently someone sat me back on the chair ... I was headed for the toilet!). Things are so much worse and not one person is listening (except those on this site - sorry!). Not heard anything from PALS yet - then, when I went for the botox last time, she was icy cold and told me it was all in my head again. Saw another doctor but he is only a sort of intern - he was BRILLIANT and agreed it was PMR/GCA but needed permission to treat me with steroids which was denied!!!!!!!! I wish he was my specialist! The pain is now so severe it makes me cry and I cannot possibly get up before 11.00 a.m. People think I'm lazy but the pain is killing me ... worse in the morning and evening ... I tried swimming a few weeks ago and gave up (I LOVE swimming). Today I'm falling every few steps and in agony - the neck, back, hips, legs ... actually I can't find anywhere that doesn't hurt. I know it's a matter of time before I break something else (this started with a broken arm. I have had my ears checked and they are fine so my balance is not related to that. Granted this may be the beginning of PMR but I don't fancy seeing how bad it's going to get if it's left untreated! What's worse is that now I'm having major problems swallowing - started with certain foods, now it seems to be random, no matter what I'm eating or drinking. The doctor suggested botox in my throat ... I'm VERY reluctant to try that but I will if I have to. I almost choked on a tablet the other day when my body wouldn't swallow it down. I feel as if I'm being attacked from every angle by my own body!

Sorry, I didn't mean to splurge! Please forgive me. I go back for botox in 2 weeks - can't come soon enough.

[PMRpro Ambassador in reply to allwritemel1967]

No need to apologise - and you MUST find a competent and empathetic doctor. Soon.