About 4 weeks ago, my PCP told me he thinks he figured out my headache - Temporal Arteritis. I am very relieved to know what is wrong with me and that it is treatable. However, it is taking forever to see a neurologist (first available appointment is 8/18/2011 and I made it three weeks ago). I called Johns Hopkins Vasculitis Center but can't see a doctor there until September.
My PCP started me out on 60mg Prednisone but I am now down to 45mg for the next 4 weeks. At 60mg, I felt great after a few days. At 50mg, I felt really good with just a mild headache and mild joint pain now and again. At 45mg, my headache is worse, I have horrible joint pain in my hands, hips, neck and anckles, and stiff neck and shoulders. Also, the numbness in my right hand and toes is worse.
Last week, I started experiencing extreme dry mouth (feels like my mouth and bottom lip is on fire) and sores inside my mouth. Is this the arteritis or the prednisone?
What's freaking me out the most is my vision - I am so afraid. I do not understand why it is taking so long to see a specialist and is a neurologist going to be able to put all the pieces of the puzzle together?
No one around me has any idea or interest in learning about this so I feel completely alone and lost. The more I read the more concerned I become. Please communicate with me and share your experiences.
Thanks and good luck.