Loss of sight scare

[Whittlesey]

Hi Everyone,

Hope all are well, coping, with these inflammatory conditions.

I am just home from a NYC Hospital w an event that was truly frightening. And again it concerned doctors, claiming to be "experts" in GCA, and not knowing what the h--- they were doing.

After 2 bouts of penicillin, I walked in the hot sun, my cheeks were red, itchy, having trouble swallowing, then hard to breathe.

Went to Hosp, clclosest, which happened to be affiliated with the Hosp who missed the GCA diagnosis.

After an opthmalic exam, I started losing vision in my left eye.

Upon telling the opthalmic dr there, she said she would be back.

She didn't return. They didn't include my maintenance dose - 2 MG's of medrol in the medications given, the next day there.

I finally got that -- 8 hrs later. Asked for a larger dose because of the frightening loss of vision.

"No"

I got the opthmalic Dr to return.

She said her boss, who was a GCA expert said he had put all my data in the computer and the last 4 times my c reactive protein was high, I had had no vision loss,

Therefore,

I couldn't be having now! now.

But I was!

Back and forth, back and forth explaining GCA etc etc ---

One young Russian Dr said she agreed w me and got the increased medrol (20 MG's) and gave it to me.

Experts? Sounds good doesn't it, in a prestigious office?

He wasn't.

The young Dr is a doctor, treating her patients.

This is so,

not good.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear about travails in hospital recently. Just because your raised bloods didn't correspond with any eye problems previously, doesn't mean to say they never will - and any consultant should know that!

Glad to hear you did eventually get treated by somebody sensible, but I'm sure you were very worried, unnecessarily, beforehand.

Take care.

[Whittlesey in reply to DorsetLady]

Thanks, Dorsetlady. I am in so much agreement.

With the potential of GCA at work, I don't think I have ever met such an uninformed, yet cock sure --- people in my life.

When the first plan of no medrol was presented, theopthalmologist assured me, they would monitor me through the night.

I said, " and

[Whittlesey in reply to Whittlesey]

Sorry, am on the android.

To continue my reply to Dorsetlady,

I said "and what, watch me lose my eyesight?"

She was exasperated, shook her head , as if I didn't know what I was speaking of.

But you see, I do -- I have GCA, I have been warned by other doctors of its potentials. I have studied and researched it. I know the potential.

She apparently had no idea what GCA is.

Nice.

Thank god for the young Dr who thought to call a rheumatologist.

In all honesty, this is truly troubling. This was not healthcare treatment.

[PMRpro Ambassador in reply to Whittlesey]

The thought of there being an ophthalmologist who doesn't know what GCA is is unspeakable...

Usually they eye people are even more insistent on high doses of steroids as they are so aware of the devastation of visual handicap.

[mel-21 in reply to PMRpro]

Hi PMRpro

So which Dr is fast to diagnose the GCA?

Rhumy or optamologist?

I'm going to see the eye Dr. Next week and I was thinking if It will benefit me at all. Cause I've seen numerous doctors with no answer.

[PMRpro Ambassador in reply to mel-21]

You have told me in the past you have already seen both rheumatologists and eye specialists. I think it is time you accepted that whatever it is you think you have - it isn't GCA.

[Jackoh]

That must have been horrific for you. It really is so frustrating, frightening and dangerous when the so called "experts" take no notice of what you are saying and experiencing. Do hope that you are now on the up. Jackie X

[Whittlesey in reply to Jackoh]

Thanks Jackoh. I am feeling better and am in so much agreement. So far from being "experts" and the danger -- is pretty large.

Thanks Jackoh

All my best

[PMRpro Ambassador]

If there is one thing that infuriates me it is doctors insinuating you are lying about your symptoms.

And he has it the wrong way round - it doesn't matter what happened last time, last week, last year. It's the here and now that matters!

Hope it's all improving now though

[Whittlesey in reply to PMRpro]

In so much agreement Pmrpro. Thanks.

As a paralegal, I almost couldn't believe what I washearing, when the young opthmalic dr told me what her boss had said. She called him her "boss".

I said " and what his experience with GCA?"

She said, " oh, he has seen hundreds of people with it."

"Really?" I said. "That's a little hard to understand, because GCA is rare, there are not hundreds in New York that have it. There may be 20 at most.....!"

"Oh no," she said, " he sees hundreds."

I nodded my head yes, as if "oh and the moon is made of cream cheese isn't it? ----"

Pmrpro, I don't think he was implying I was lying, he wanted to attribute this, to some other cause.

To give me medrol, would have been to attribute the dark area, to GCA. He seemed to not want to do that.

This hospital is now an affiliate of Mount Sinai, m. Sinai is apparently in the process of buying this hospital out.

I was picking up on -- the not linking this area of vision darkness to GCA and was getting pretty angry.

The young Russian dr came in and said what I was saying made sense and rheum, who could take precidence over opthmalology-- had said -- " give her the prednisone". She did.

Really unbelievable.

What else could it have been -- allergies? Good god

Thanks prmpro.

All my best,

[Whittlesey in reply to Whittlesey]

Pmrpro fyi Mount Sinai is the hosp who, for 4 long months, misdiagnosed my GCA.

This hosp -- where I went Friday is now an affiliate and is being bought out by Mt Sinai.

smh medicine?

[PMRpro Ambassador in reply to Whittlesey]

Scary! I'd be moving house...

[Trixiechamp]

How utterly terrifying!! Bless you and if that's not enough added stress to make things even worse then I don't know what is...it's becoming more apparent that when one of my close friends who has a rare blood cancer told me that you have to become an expert in your own condition and basically educate others and manage yourself, he was absolutely right. So glad you stood your ground, best wishes for feeling better x x

[Whittlesey in reply to Trixiechamp]

Thanks Trickiechamp, absolutely right!

You do and seemingly, even then, you are dealing with their egos.

I called the Patient Advocate and she was helping.

I wish your friend so much luck and health.

Stay strong

To our health

[Trixiechamp in reply to Whittlesey]

He is doing great..originally given an 18 month prognosis, that was over 12 years ago!! He is amazing x

[Tj2017]

Dear Whittlesay, how frightening and wrong was that experience. A hundred kudos for advocating for yourself. It seems apparent the US hasn't reacted appropriately to this horrible disease. Follow up and advocate for your care.

Tj

[Whittlesey in reply to Tj2017]

Absolutely right TJ2017.

It may be the rare aspect.

Many doctors aren't aware and don't seem to want to be.

Smh frightening.

Doing just that.

Thanks, TJ2017

[Rimmy]

Hello Whittlesey

What a horrendous experience !! Since I joined this forum I have realised even more than I used to (I am 'naturally bombastic') how important it is to be assertive when you engage with medicos of all kinds. But if they are just not listening to what you are saying about what is happening to you then that is something else and quite reprehensible - not to say incompetent, irresponsible and very 'dangerous' for you !!

I hope things get better for you and you find some capable doctors.

Best

Rimmy

[Whittlesey in reply to Rimmy]

Well said, Rimmy. Thank you.

It was frightening and dangerous. I knew it was dangerous.

Yes, seeking more appropriate care. And so agreed, being heard, is major.

They are an affiliate of the Hospital, who misdiagnosed the GCA, which was later biopsy proven.

smh

All my best

And to our health!

[PMRpro Ambassador in reply to Whittlesey]

At least you do have the positive biopsy - they can't tell you it was all in your mind or could have been something else.

[Amkoffee]

Is you sight completely back?