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Oct 14, 2017 · giant cell arteritis in Autoimmune Diseases

My Mother is home. It’s a battle. The people that evaluate her, to see how many hours of respite time she qualifies for are terrible. For instance, after the first 2 evaluations, I decided to sit in on the third. They had my Mother lay in her bed and then try to get up to make her way to the Bathroom. She always gets up out of bed and turns Right, which is the wrong way, so they had someone there to guide her Left. Then, they posted someone at the end of the bed because 99% of the time she takes a Left at the end of the bed, she is supposed to go straight. In short, they guided her the whole way and back. When I got the results of the evaluation, they said she had gotten “better” at negotiating her home and cut her hours! At this time I do 3 overnights. I go to my Mother’s house at 9 PM and get relieved at 7 AM. It is draining to say the least because even if she isn’t up 5-10 times during the night, you are “on-guard” because she is quiet and you don’t want her to fall or something. Money from the lawsuit will help us to hire someone to do the over nights and get help during the day. We do have visiting nurses during the day. I have been doing this for 3 years. The first year, when Dad was home and “with it” , I did all 7 nights by myself. I would help them into bed at 10-ish and leave at 3 or 4 in the morning. Over time my Father could not handle my Mother so my Brother and I have been doing the over nights since. It is very tiring and I should probably be home with my Wife as , we have a new lawyer from Boston but I know from prior experience, in dealing with our former lawyershe has a Mental Illness and should not be left alone. Anyway, we have a new lawyer who is now sending my Mother’s docs out to specialists. I was asking if anyone knew of specialists who testify due to the anxiety caused by our former lawyer. From day one, he only wanted to go after the primary care physician. I totally disagreed. Then it came down to crunch time and he said WE needed to find an expert. He supposedly couldn’t locate any. My Brother and Sister did a Google search and 50 or better popped up. This was on a Friday. I e-mailed a doctor in Texas who seemed good, Mayo Clinic trained and that is where I got most of my research material on the disease. He called me that night, a Friday night!@ I sent him many of my Mother’s docs and a time-line. He, without prompting, said “they (both the ER and the Eye specialist), should have started IV Therapy, IMMEDIATELY, before the diagnosis was confirmed.” He is animated in his speaking and I am pleased. I give his contact to our former lawyer, who then supposedly has to check the expert out. Then after about 5-6 weeks of waiting the expert supposedly contacts our former lawyer and says, “we can only go after the primary.” The former lawyer tells me this and I am dumbfounded. I don’t believe one thing the former lawyer is telling me. I spoke to the expert and there was no way he did a complete 180. That is why we have a new lawyer and why I am anxious and not so trusting. I asked the new lawyer if I could reach out to the expert and ask him about the supposed change in philosophy but was told we will do that, if needed, at another time.

Oct 12, 2017 · giant cell arteritis in Autoimmune Diseases

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.