Lori - you and I think a lot alike! I believe 100% that we have to be our own advocates and definitely not be jerked around by the docs.......like I was for a year and eight months. I had two negative EMG's, neither showed that I had myopathy. I think the first one was too early (the first week of symptoms) and the second one, done by a resident, was one needle stick!
What really bewilders me, and other members I have spoken to, is that we know the criteria for ruling out these diseases, but why is it that some of us have some tests, but not others and others have other tests, but not too many of us ever get the full list?
I had to beg for the tests that I did get and I have to date never had a spinal MRI or x-ray other than my neck, never had a 24 hour urine for heavy metals or poisoning, a myelogram or the high resolution test. I know for a fact there is something terrible going on in my back, since I can no longer sit up straight and I can feel the burning pain. I also have a lump in the back of my neck, but because the size of it fluctuates my gp doesn't think I should worry about it. Imagine, not worrying about it!
The docs tried to make it sound as if this was all in my head and as soon as I left their little network, went out on my own to a neuromuscular clinic (thanks to this forum) I got my biopsy and diagnosis. I still have many questions and they still don't act like my condition is any big deal, but at least I am getting the treatment. I really love it when they tell me how I feel and how I couldn't possibly feel.
Sorry for spouting off, but you are so right and you're wonderful for making sure they didn't miss something with Timothy. Do the same for yourself too. ~Leslie
What really bewilders me, and other members I have spoken to, is that we know the criteria for ruling out these diseases, but why is it that some of us have some tests, but not others and others have other tests, but not too many of us ever get the full list?
I had to beg for the tests that I did get and I have to date never had a spinal MRI or x-ray other than my neck, never had a 24 hour urine for heavy metals or poisoning, a myelogram or the high resolution test. I know for a fact there is something terrible going on in my back, since I can no longer sit up straight and I can feel the burning pain. I also have a lump in the back of my neck, but because the size of it fluctuates my gp doesn't think I should worry about it. Imagine, not worrying about it!
The docs tried to make it sound as if this was all in my head and as soon as I left their little network, went out on my own to a neuromuscular clinic (thanks to this forum) I got my biopsy and diagnosis. I still have many questions and they still don't act like my condition is any big deal, but at least I am getting the treatment. I really love it when they tell me how I feel and how I couldn't possibly feel.
Sorry for spouting off, but you are so right and you're wonderful for making sure they didn't miss something with Timothy. Do the same for yourself too. ~Leslie