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Giant cell arteritis:I’m afraid and would appreciate any advice
Polymyalgia Rheumatica (PMR) | Last Active: Nov 26, 2023 | Replies (38)Comment receiving replies
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.
Replies to "My Mother was sick for months, complaining of fatigue, joint pain, weight loss and then jaw..."
Hi @petel, based on my experience with self-advocating and endocrine issues, the first thing I thought of when you mentioned her eyesight loss was a pituitary gland tumor. Many people with a pituitary tumor don't know it until they wake up blind one morning, and this doesn't mean that the loss of sight is permanent. Has she had an MRI yet regarding the eyesight issue?
Self-advocating has unfortunately become a necessary part of America's healthcare journey, and there is a learning curve for success. Keep journals of her symptoms with timelines, appointment history, completed lab and imaging tests, etc. Tracking everything is essential. Also, perform online searches using reliable, respected sources (web sites like Mayo Clinic, Stanford, John's Hopkins, Cleveland Clinic, etc.) There are doctors out there who are okay if you do your own research. Thankfully, my Mayo doctors have been very open to me doing this and it actually enabled us to solve my biggest medical mystery.
May I ask, how old is your mother and did she have Diabetes or any other health conditions?
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Hello @petel,
Thank you for being a strong advocate for your Mother. I cannot imagine the pain and anguish you both have been through trying to get help. You are right...it is definitely not fair. I'm glad you have a lawyer and hoping they will be able to help you and your Mother. I hope the other Connect members tagged by Kanaaz (@kanaazpereira) will be able to share their story and provide some helpful information.
I can relate somewhat to your situation but ours was not as bad and we decided not to pursue litigation. My wife had a gall bladder attack and I drove her to the ER at our in network hospital in the middle of the night. They quickly diagnosed the problem and sent us to St Mary's ER. The doctor there wanted to do surgery that night to remove the gall bladder but because my insurance company wouldn't pay for it, they made us schedule the surgery to remove the gall bladder the following week at our in network hospital (non-Mayo network). Long story short, I was in the waiting room for almost 5 hours when it supposed to be a one to two hour laparoscopic surgery. The nurse came out and asked me if the doctor had talked with me yet and I said no. She said she would have him come out and explain what happened. There I sat for what seemed like an eternity wondering what happened. The doctor came out still in his scrubs and seemed like he was covered in blood. He explained that they "nicked" an artery and she almost bled out but she would be OK. She was in the hospital for three days recovering and came home with a drainage bag attached. She went back to the hospital for a follow up and they discovered bile was still leaking and they would have to do another surgery. The doctor told us our insurance company had authorized three consultations with Mayo Clinic specialists - one who he said was the world renowned expert in gall bladder surgeries. We went to the Mayo Clinic and met with the specialist and 3 other people who I assume were doctors - the first question we were asked - "what did the doctor tell you happened?". So right away I'm thinking they are worried about litigation and I'm only worried about my wife. They schedule the second surgery at Methodist Hospital and it was successful. While I was in the waiting room during the surgery, I overheard two other men talking to each other when one asked the question "what is your wife having done?". His answer "oh, they are fixing a botched gall bladder surgery done at X hospital". I would have like to not have paid two hospital bills but I put that on my insurance company who I no longer have. I was happy to have my wife back and the end result of the whole ordeal was she lost over 100 lbs and has been able to keep the weight off. She is now much healthier that I am.
Hoping for some answers for you.
John