Giant cell arteritis:I’m afraid and would appreciate any advice

I am interested in connecting with other patients that have Giant Cell Arteritis. I was diagnosed in May 2017 at Mayo Clinic.

I am interested in connecting with other patients that have Giant Cell Arteritis. I was diagnosed in May 2017 at Mayo Clinic.

My Mother was sick for months, complaining of fatigue, joint pain, weight loss and then jaw pain. She was seen by her Primary for months and they kept sending her home with Nasal Sprays. It came to a head when my Wife a former Nurse brought my Mother in for an "emergency visit." They had her come in during the lunch hour and began picking on her, saying' "you were just here a few days ago, you're not having a stroke." My Wife asked the P.A. what her diagnosis was and she said, " Congested Jaw." My Wife said she had never heard of such ab ailment. That was the end of their interaction as the P.A. then shut my wife out of the conversation. They basically patted my Mother on the back and said call this weekend if you are not feeling well. Sunday, Father's Day, my Mother was having a little blurry vision out of her Left Eye. I tried to get her to go to the ER, she said , "no, not on Father's Day." I told her if her sight was not better in the morning she was going to the ER. I checked her thru the day Sunday as her team the Red Sox were on TV. Monday morning, not better, not worse. I take her to the ER. Again, they start out with ruling out a Stroke, CAT Scan. But the ER doctor sends for Blood Work with a order to have SED Rate checked, this is not in a normal ER Blood Test. Her SED Rate was 58. He sends us out of the hospital to the Eye Doctor on-call, his office is a block or 2 away. The ER doctor said to go directly there. We were there hours and the Eye doctor kept checking her Eyes and telling me something was wrong and all these bad things that could happen. On his worksheet he had GCA/TA for diagnosis. We leave the check up room and go into an office while he is on phone. He sends us back to hospital for a C-Reactive Protein Test and going out the door asks who my Mother's pharmacy is and then says,"you can pick it up on your way home." No sense of urgency. We did pick up the pills, 80mg of Prednisone daily. That was Monday, Tuesday my Mother wakes up Blind in both Eyes !! Many screw up bu all involved. Her Rheumatologist from the hospital got on her knees and gave my Mother her "Professional Apology", the first 2 time we saw her. She has since moved back to California but did tell me she wrote everything up and the docs are in her former office at the hospital. Of course those files came up missing. The Rheumatologist did call me and tell me everything she wrote about my Mother's lack of timely diagnosis and treatment and it blasted all 3 entities, the Primary, the ER and the Eye specialist. Instead of being sent out of the hospital, why wasn't IV treatment started? Instead of going back to the hospital for a C-Reative Protein Test, a diagnostic tool for something you already had diagnosed, why weren't we sent back to the hospital for IV treatment? I have been back to the hospital trying to recover notes. The "ethics Administrator" told me, this won't go to court, we don't want that and neither do you. Anyway, we have a lawyer and I am doing a little work on my own and need to know how we contact, or if anyone knows a doctor, who would be an expert witness in my Mother's case. We need someone and need the suit to be able to keep her home. She was a vibrant woman who ran the food shelf at Church and did much for our family. Always on the go. Now, she sits in darkness, it's not fair.

Hi @tinkerbell and @dawnmarie,

You may notice that I moved your discussion and combined it with this existing discussion on giant cell arteritis (GCA). As Mentor @johnbishop suggested, I did this because we thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the entire discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@tinkerbell, @dawnmarie, what are your main concerns about your diagnosis?

Input on tapering Prednisone.

Input on tapering Prednisone.