A little sigh of relief ....

[Grammy80]

First of all, I'm so thankful for every one of you...I go to the 'almost ready to cave point' but all of your input kept me from accepting what I knew in my heart was wrong and made it really scary to go to bed tonight.

I just got an email from the rheumatologist "who felt so unsettled he contacted the ophthalmologist this evening." He wrote to me at about 10 PM and said that though this was 'atypical' there were losses in the field of vision he couldn't explain. He is sending a referral to the Massachusetts Eye and Ear Clinic in Boston, Massachusetts, and wants me to continue with the Medrol until tests can be performed down there that they are unable to do here in Maine 'to investigate further the possibility that the GCA caused this latest damage and they can put me on the appropriate dosage of Medrol with the proper taper'. He even said when he reached out to the ophthalmologist there were 'things' he hadn't realized.

When I last called his office today I told his assistant that at my age I was less concerned about my liver and bones than my sight.

For whatever reasons, I am grateful...when the two specialists are in disagreement like that....you might as well have NO doctor..I give him credit for pursuing it for whatever reason, writing to me and now I will wait to be contacted by Mass Eye/Ear. Just give me my drugs and I'll be secure....

...and if I was an angel....I would fly over all your homes and sprinkle angel dust.

BIG HUG TO ALL xo 💖

[KellyInTexas]

Hi Marilyn-

Oh gosh!

Just catching up with you here- you’ve had a very frightening and frustrating time - I’m so sorry to hear this.

I’m so pleased, and know how you must be now also, that a cohesive / consolidated and comprehensive plan is now in place.

I hope you will be sleeping easier now.

Sweet dreams!

[Yellowbluebell]

I am so relieved he is taking you seriously at last. I have been so scared for you as no doubt have all the others who have been responding over the last couple of days. You have been very strong. I can maybe stop sticking pins in to my little doctor doll now!!! Big hugsxxxx

[Grammy80 in reply to Yellowbluebell]

🐱‍👤 Yes, no more pins for the doll...it worked!!

This morning he called and said 'I just don't have the explanation and it is beyond my purview'. He reached out to the opthmologist again and he said 'she explained things I did not understand about the loss in your visual field.' I think it takes a big man to admit that. He further said to call if I don't hear in two weeks...and call him with any issues. Just a big giant WHEW~! I'm breathing smoothly again and not afraid to close my eyes... xo

[Yellowbluebell in reply to Grammy80]

It does take something to admit you don't know everything but it was stressful for you whilst he worked that out. Will lock the doctor doll away till the next dippy doctor surfaces!! It was either the doll or dance naked in the garden around the tree and my neighbours are just not strong enough for that sight!! Hugsxxx

[Grammy80 in reply to Yellowbluebell]

hahahaha Maybe if you hug the crocodile...snugly...while you dance?

[Yellowbluebell in reply to Grammy80]

Well it would cover some bits but you saw the trouble it got me just a few weeks ago!!

[Grammy80 in reply to Yellowbluebell]

Haha I see if frequently.....I put it on loop.🤣😂🤣

[Yellowbluebell in reply to Grammy80]

I keep the neighbours entertained if nothing else. Xx

[scats]

You come over as an amazingly strong woman, and yet you are always thanking us. This is a much better way to start the day, I'm so pleased for you. Hang on in there and keep being strong you are an example to us all. 👨🏼‍🤝‍👨🏼👨🏼‍🤝‍👨🏻👩🏾‍🤝‍🧑🏿👨🏻‍🤝‍👨🏻👩🏿‍🤝‍🧑🏼👩🏾‍🤝‍🧑🏽👨🏽‍🤝‍👨🏻👩🏿‍🤝‍🧑🏻

[Grammy80 in reply to scats]

I thank all of you Scats...because I'm so grateful all of you keep me from feeling alone. My son & DIL do all they can from Canada....they used to time their day around my Doctor visits and we would dial up the cell phone and they would be right there...and they will do it now and would have made some calls today if things didn't turn out as they did.

I love my son in Indiana, almost 60, but 'living his life is a full time job.'

But you know how sometimes you just don't want to upset your family....so I turn to you folks. I do have good friends here...but it I call and complain about something...they have husbands and families to take care of...so I usually share when a problem is solved. I can call them at the drop of a hat for a ride....but I don't like to just wha! wha! wha!😥😥😥 You know what I mean? xo

[scats in reply to Grammy80]

I know, a problem shared.... that's what we're here for.

She didn't really send that crocodile film across the Atlantic, I'm surprised it got past the sensor, but if it made you smile, it was worth it.🤭

[Grammy80 in reply to scats]

Crocodile film? Crocodile film? What are you talking about woman?🐊🐊🐊

[scats in reply to Grammy80]

So sorry, my mistake. Just that one of our number is a fearless crocodile wrangler and I thought by what you were saying you may have seen the evidence.🤭

[Grammy80 in reply to scats]

Just want to be discreet.....should anyone else want to share a secret...just saying! xo

[Yellowbluebell in reply to scats]

I wanted to make grammy laugh! You three saw it and it even cheered jeff up who isn't easy to amuse! At least there is no film evidence of the police escort fiasco!! We hope!!

[Grammy80 in reply to Yellowbluebell]

🎬🎥 🏆🏆

[scats in reply to Yellowbluebell]

It looks like you succeeded!

[Grammy80 in reply to scats]

......with a little help from my friends. 💖

[Topcar]

Phew!!! Thank goodness there is light at the end of the tunnel at last!! Hopefully the cause will be discovered now the docs have come to their senses, you have been so strong and shouldn't have the extra worry of their doubts on top of the scary symptoms you've had to contend with. Hugs and a big sprinkling of fairy dust for yourself 💖

[powerwalk]

Big virtual hug back!!! Very best of luck x

[Koalajane]

So pleased for you that he has reviewed it. You are a strong lady

[MrsNails]

Oh Grammy, what better news to wake up to 🙏🏼 the vibes from over here must have filtered across to your Rheumatologist causing him to think again....

Thinking of you & sending love 💓

[SheffieldJane]

That is what I call a result Marilyn. Your guardian angel has worked very hard for you. 😇 Bless you. Xxx

[Grammy80 in reply to SheffieldJane]

Jane...it is looking like I have 50-60 guardian angels, right here...and some of them ready to fight~!! xo

[SheffieldJane in reply to Grammy80]

That’s for sure ! Good deeds in a naughty world.

[jinasc]

Whew....................now the 'pester' approach................remind them every day you are on a knife edge and they need to move fast...................try howling, crying, etc down the phone and get to that clinic fast. Me, I would exaggerate everything little thing or be sitting at his door every morning when he comes to work.

Opthamologists are trained to spot everything that saves your sight, especially with 'stuff' that endangers your sight. Give him/her a big hug from me xxxx

[Grammy80 in reply to jinasc]

You are something~!!!! I do think it is that simple...opthamology....save the eyes, period..at any cost!! I like that. Rheumy called this morning and definitely wants to stay in touch and I think he 'got it'....for me it is all about seeing. I don't even have osteoporosis yet...

ALL of you are a part of my heart~! xo (and my backbone)

[DorsetLady PMRGCAuk volunteer]

Well at least he had the nous to talk to Ophthamologist and has eventually done the right thing by you.

But strange how they always come up with the “atypical” tag - when they have got something wrong.

[Grammy80 in reply to DorsetLady]

So right... atypical....well, having two doctors disagree about how to treat is an 'atypical' experience I don't want again. I felt like I was just hanging in the breeze and who knows what would happen while they ironed it out.

I'm really happy it worked out like it did, for sure. I can't measure everyone's support.💖

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

According to the “serious incident” exercise carried out by my surgery following debacle - my GCA was “atypical” according to my GP.

Funny that, when the Ophthalmologist who diagnosed called it typically Temporal Arteritis (aka GCA)!

Take care 💙

[Grammy80 in reply to DorsetLady]

Isn't that amazing...and frightening! Atypical~indeed. Did you have surgery? At what point in your journey? Part of the debacle of the accurate diagnosis?

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

The debacle was 18 months of misdiagnosis by GP (PCP)

The Ophthalmologist diagnosed me after tests when I went to A&E (ER to you) after 4 days of blurred vision culminating in sight loss in right eye.

I got a copy of the GPs surgery exercise some months later - I wasn’t asked to comment on it at the time!

[PMRpro Ambassador]

"when he reached out to the ophthalmologist there were 'things' he hadn't realized."

Like how Actemra works perhaps?

I am very relieved to hear this!

[Yellowbluebell in reply to PMRpro]

It does make you wonder what the hell he was thinking when he said reduce to 6mg. I wonder how many people without the forums.help would have done as they were told!! YBB

[Grammy80 in reply to PMRpro]

I know!! I even put that in one of my emails to him. I got so flustered yesterday I forgot to give myself my injection....I got into bed and my eyes remained wide open...then it hit me...got up and did the deed. Such pearls from all you girls...xo

[Grammy80 in reply to PMRpro]

I can't read..... "Like how Actemra works perhaps?" without laughing...I can hear you!

[PMRpro Ambassador in reply to Grammy80]

[Melti]

Phew, what a relief, that is much better news - onwards and upwards xx

[herdysheep]

Thank goodness. At least he has a conscience and enough humility to realise there was a bit more to it. Do hope things move on at a pace to sort it.

[Luciejc]

Oh Marilyn, so much stress and anxiety...just what you don't need! But what a relief to have a plan for going forward. You really do have to push to get an appointment. Rest up, you have a trip ahead of you. Lots of hugs and prayers.

[Grammy80 in reply to Luciejc]

Am I lucky? Tonight my son and DIL in Nova Scotia called and said my son would come down and stay with me and bring me back and forth and then to Canada. I may not even get a call for a few weeks...it will entail maybe more than one trip...he would have to isolate from his family for two weeks....we have decisions to make..but I love them so much for it. xo

[5lupins in reply to Grammy80]

So good to hear your better news. I have been following your story. Take care. Jen

[Grammy80 in reply to 5lupins]

💖Thanks, Jen

[Luciejc in reply to Grammy80]

Marilyn, you are blessed to have such a wonderful son and DIL. I will continue praying that you get an appointment soon and that all goes well for you. I have glaucoma, do you? Prednisone has been playing havoc with my eye pressure. Keep in touch..everyone here is very concerned. 😍

[Grammy80 in reply to Luciejc]

NO Glaucoma.....be faithful with your drops. take care xo

[Slowdown]

Boy have you had a rough ride lately and through it all you've shown such spirit, as you say there's only so much sharing you can do with other people - but now, so much love and practical help from your son as well as the Big Guns getting together (finally). Being listened to, with follow-up action, is healing in itself and here's wishing you the very best of care, both body and soul.

[Grammy80 in reply to Slowdown]

That is one of the most important things I get from the forum...don't give up or give in...they (the collective they on here) keep reminding all of us and give us strength. xo

[Thelmarina]

Sometimes you just can’t believe the unexpected ordeals your body puts you through! I hope very much this gets sorted with sight protected. You must feel so vulnerable. Sending warm wishes and my fingers are crossed for you! 🤞❤️

[Hidden]

Oh so glad you’re getting some coordination between doctors and a plan of action. Do keep us updated. 🤗

[Jackoh]

Been off line for a couple of days so just catching up with your latest events. What a worrying/stressful/frustrating/ annoying/worrying time that you’ve had.

So pleased that AT LAST rheumy seems to have woken up to the seriousness and foolhardy suggestions that he was making. Glad that he is now working with the ophthalmologist for your good. Don’t know if you’ll stick with this guy ; he was making some serious decisions that were dangerous really. Glad that you have now also got your son and DIL on board. Take care- we are all routing for you. Much love and prayers 💕💐💐