I have made an attempt to write this about 4 times now. I just don't know where to begin other than to say, I am truly disheartened in the midst of receiving the poorest level of care in my attempt to get a final diagnosis of GCA. Yesterday was suppose to be a very important milestone and trip to my ENT who pre-diagnosed me with GCA. (Why I ended up with an ENT...let's just say, I was on my 4th PCP who had no idea what was going on!) My blood tests came back negative and I attribute that to either (a) I'm in the low percentage of those whose blood work is negative but still have GCA or (b) It was because I was on steroids. Well, she threw the towel in, stating that she didn't know what was going on. I told her that I want an immediate referral for a Rheumy and further reminded her that my eye pain and blurry vision had worsened and that I have every symptom in the book that screams I have GCA. She immediately called an Ophthalmologist downstairs and I spent the next 3 hours with this joker. I won't go into all of the details but after he spent 15 minutes yelling at me because I should have been on a higher and consistent dose of steroids. (By the way...my husband phoned the ENT 3 times asking for a refill for my steroids because she was going on vacation. We ran out of meds and my husband ended up getting a low dose steroid pack from work.) This Dr. was furious that my husband who was not an MD provided this medication. By this point, steam was shooting out of my ears and I almost walked out but I was extremely concerned with my eye pain and blurry vision. Long story short, the tendon behind my right eye was inflamed (shocker!) and then (no kidding) he sat there for 5 minutes tapping on his piece of paper wondering if he should take me off the steroids for a week OR prescribe a high dose. This was after he informed me that yes, he believes I have GCA! I was speechless and it probably was a good thing because I really wanted to use the F-Bomb! I couldn't believe I was hearing these words. I walked out of the office in tears, no prescription, canceled my next appointment with this ENT and now I will be calling this Rheumy to get in ASAP. I'm extremely depressed knowing that I spent 4 hours of my time with two MD's who produced NO results. I can't imagine what this is going to cost me...my eyesight and/or the draining of my bank account?! It's time to jump back on the saddle and make some important phone calls. I hope there are better days in my future...this sucks!
Uggghhh...I'm truly disgusted with my docs! - PMRGCAuk
Uggghhh...I'm truly disgusted with my docs!
I'm so sorry - but I'm a trifle confused (I'm British, masters of understatement!) as to how in one breath an opthalmologist can say "you have GCA" and in the next debate STOPPING pred altogether.
I do hope you find an honest one asap instead of people seeking to take your money under false pretences...
I’m in the USA and reading your experience I am just flabbergasted at the treatment you have (not) received.
Will your insurance cover emergency room treatment? If so, is there any reason not to go to an emergency room and tell them about your presumptive diagnosis and your visual issues?
Micheleinnaples - What an awful experience and they appear to have made such a mess of looking at your symptoms and treating you accordingly. Yes quickly jump back on the saddle and make those phone calls. Often it seems to boil down to DIY care unfortunately.
Sadly I am not surprised...after 2 years..nagging 6 GPs ...who denied there was anything wrong...and refused to refer me on to anyone...i thought I would go crazy...living on codeine...(cuting most of the story out)
One morning I woke almost paralyzed....ended up in a&e...who...after a 7 hour wait in agony...diagnose PMR..and gave me steroids..pain free in 2 days after 2 years!!
Gp refused to see me the following week..managed to get a phone call..and told her about it..
Her response was...."Oh.. I didn't think of that!!!"... (I had even suggested it a year ago And she poo pooed the idea!)
FFS...HOW ARE WE EVER TO GET ANYWHERE WITH THESE DRS
I had 5+ years - until I presented the diagnosis myself but I did at least then get a rheumy referral. Who didn't agree despite the less than 6 hour response to 15mg pred. The impression created was that he thought it was beneath him to diagnose something as minor as PMR. I saw him once, he gave me 6 weeks of pred and some test, come back in 6 weeks. When I went back I was relegated to the assistant: a "GP with a special interest" who repeated the previous appointment, word for word, action for action, and then said "I don't know" and fetched the "Boss". Who also appeared not to know. Luckily a different GP agreed with me.
I mind less for PMR, it is really just a pain in the anatomy, but when the patient has GCA symptoms and they can't get it right - they are risking the patient's sight at the very least and possibly their life. But even rheumies have a fixed image before them that is the "typical GCA patient" - and most patients simply don't fit.
Isn't it amazing the number of us who have to resort to diagnosing ourself? I agree about the "one size fits all" mentality. It sickens me!
Just came across your post and wanted to let you know that I feel exactly as you do regarding the quality of medical care we are dealing with in the US. Especially as seniors, we are getting short shrift as far as being listened to with respect rather than being treated as 5 year olds and receiving competent diagnostics and treatment. I am in a similar situation as you having biopsy positive for GCA discovered after I suffered 2 strokes (I am sure due to the GCA....of course doctors do not agree). I was assigned a young Rheumatologist in hospital who I have no confidence in and began a rapid taper of Prednisone which left me feeling all my original GCA symptoms again. He did raise my dosage after a myriad of phone calls yesterday but I don't know what his future plans are. Oh, his nurse told me that he said if I have any vision changes this weekend, I'm to go to the ER.....DUH!!!!!!!!
I see your post was 8 days ago and am wondering if you have received any satisfactory advice yet. Wishing you all the best.
Mrs. Howard, would you believe after a Dr. referral to a Rheumy, and 3 calls later, no response. I had to leave v/mail messages! My husband left another message with a different Rheumy. Really? WTF? (Sorry...I closely read your situation at hand and it really upset me!) To answer your question in a much more eloquent manner, I'm in "limbo land." This morning I woke to extreme facial pain and pain behind my left eye. I am fearful of losing my sight and the night sweats are worrying me. I hate to admit it, but severe depression is setting in and it isn't pretty. I'm sure you can relate. I answered your questions and enough about me because the beauty of this forum is that we can support one another....HOW ARE YOU DOING? What city/state do you live in? Hang in there my friend! Better days are on the forefront!
So sorry but not surprised that 8 days have passed and you have not received any responses from the Rheumatologist after a Doctor referral. He is most likely in a very important Golf Tournament or got complimentary tickets to the NFL Playoffs. Anything is more important than Patients these days. I firmly believe that. My family doctor has canceled my last two appointments. He has been named Chief Medical Manager at one of our 3 hospitals, therefore, he is only seeing patients from 9:00AM til 11:00AM 3 days a week...nice, huh? It's all about money! His Physician's Assistant is handling everything and she is ill equipped for such responsibility.
Sorry to be such a complainer as I know you are having serious problems yourself. I guess what I'm trying to convey is my understanding, empathy and also mutual frustration. I hope that Monday brings you some resolution.
I am in the NE Pennsylvania. Weather here not helping my mood. 66 degrees yesterday and 18 degrees and snow today....Crazy!
I will continue to hang in there and you do the same.
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