Hello weetagirly,
I feel your frustration and would just say to continue your hunt for the right doctor. I remember back in 2001 I had many weried things going on with me that know one had answers for. Doctors thought MS,SHINGLES and many others things were the problem. They refused to do an MRI in the location I thought was the problem because they said my symptoms would not be coming from that area. After 7 months of diffrent things that doctors tryed on me I came down with phenomia and when my temp. Got 104 I started to shake terrible. So I saw this new doctor and told him other symptoms I have had over the last 7 months. He had me stand up close my eyes and I fell over into his arms. He ordered me an MRI in the area I had asked my primary 7 months ago to do. It came back that I had a tumor growing inside my spinal cord at c6 to t4 and was getting ready to burst the cord wide open because of the size it was. 7 hrs into my 12 hr sergery I was parilized from the chest down. Doctors said this is probly as good as its going to be, but God had diffrent plans for me. Even though I have many nerve conditions and other limitations,, walking,working out,golf etc are not part of those conditions like the doctors said I would never do again. Who knows what I would be like if my doctor would have listened to me and done the MRI when I wanted ( 7 months less growth on that tumor )
Keep your head up and keep looking for that one doctor that will have the answer.
MY PRAYERS ARE WITH YOU
Paul