This is a continuation of my "feeling Unheard" post.
Have had PMR symptoms since July 16 and GCA symptoms since Sept 16.
I have seen 2 rheumatologist either will give a definite diagnosis, especially with GCA. To me my symptoms seem to fit very well and the response to steroids (50mg) was almost immediate. BUT my blood test are not showing high levels
My 2nd opinion rheumatologist is suggesting my symptoms as caused by MS which I also have and would also respond to steroids. I agree there would be a possible overlap of symptoms. She is waiting to here from my neurologist.
I saw her last on 16th Dec. At this time I had reduced with the help of all of you and my gp to 35mg. On this dose I found I would get pain in my temples, jaw, back of neck and scalp, mainly in the evening. Nothing too severe. She wanted me to reduce straight away to 30mg, I didn't though I reduced slowly over the Christmas period and have now reached the 30mg. Symptoms now are the same as before with head plus pain and stiffness has returned in my right arm, my left foot, and right hip and buttock.
So I still feel very confused, I have no faith in the rheumatologists. One thing I don't want to do is increase steroids again. I feel so much better with less side effects.
My daughter wants me to phone rheumatologist nurse but I feel I can't go there again.
Feel I want to keep reducing and see what happens symptoms wise then maybe I can distinguish between MS, UCTD and GCA/PMR SYMPTOMS.
Please let me know your thoughts