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Posts (99)

13 hours ago · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

@vvil198 – If Kaiser only allows you to take your son to a Kaiser facility you may want to try St. Judes or Shriners. He definitely needs to be diagnosed.

21 hours ago · Facial Swelling - no diagnosis after 2 years in Autoimmune Diseases

@vvil198 – Do you have any university hospitals close to you or are you close to any of the Mayo Clinic facilities? This is always so frustrating not getting any help from your regular doctors.

2 days ago · Temporal Arteritis or Giant Cell Arteritis in Autoimmune Diseases

@charann2000 – I have decided not to get the new vaccine for Shingles. I figured it would probably set off the GCA again. Glad you are doing okay. Take care of yourself.

2 days ago · Temporal Arteritis or Giant Cell Arteritis in Autoimmune Diseases

@charann2000 – I was surprised to see you back on this site. Have you had any vaccines recently? My neurologist at Mayo said to be very careful with vaccines. I had the flu vaccine after I got off of Prednisone and had some problems and thought my GCA was back. They took Sed Rates and a CRP and they all came back okay. Still have a little discomfort.

Wed, Jan 9 8:40pm · Where to next! Help! in Autoimmune Diseases

@jenea71 – Good Luck

Tue, Jan 8 7:35pm · Where to next! Help! in Autoimmune Diseases

@jenea71 – from Tinkerbell – I have a friend that went through many of the things you are going through. It turned out that she was allergic to the cobalt in her hip replacement. I have also heard of people allergic to the metal in their tooth implants. You might want to be checked for metal poisoning from the metal they are using in your tooth implant. My friend was diagnosed at Mayo Clinic.

Nov 14, 2018 · PMR or Steroid Myopathy in Autoimmune Diseases

@rachelp – I have been treated at Mayo Clinic in Jacksonville for Breast Cancer and Giant Cell Arteritis. It is a fantastic facility and a wonderful choice especially in the winter. I was diagnosed in their Emergency Room last May with GCA. A neurologist diagnosed me so I was taken care of in the Neurology Department. You will probably be seen in Rheumatology. We live in Orlando so we stay in Jacksonville when we have appointments. If you have any questions regarding hotels, I will be happy to tell you where we stay.

Nov 13, 2018 · Temporal Arteritis or Giant Cell Arteritis in Autoimmune Diseases

@elderdiana – My biggest fear was that I would go blind. My father went blind when I was about 9. We never knew why he went blind but we are now thinking he had GCA. They knew about GCA in the 50’s but I don’t remember my parents going to the doctor very often.