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Originally Posted by Susanne C.
I am so sorry to hear this. If it helps at all this has happened to a lot of us. Mine sent me to Johns Hopkins to make sure there was nothing she could do and when the doctor there confirmed her findings, severe small and large fiber neuropathy, hereditary axonal, and progressive, they both discharged me. The doctor at Hopkins offered further tests but said they would be of no real use since there is no treatment except pain management. "Good-bye and good luck" was the last thing he said.
I loved my local neurologist, she is a neuromuscular specialist, and I figured I would just go on seeing her once a year or so forever. Nope. "There is no treatment and I don't do pain management." Okay, so I asked about testing every few years to see how it is progressing. "That would be a waste of time and money because we know it it going to progress." I begged her to at least let me come in once in a while and she said it would be taking money under false pretenses. Oh, and I should be glad it isn't ALS.
I was so upset I cried all the way home. My youngest sons, then 11 and 15, were with me thankfully or I might have driven into a tree. I cried for days afterwards and I never, ever cry. I felt so alone. I am still upset about it, five years later. Thank God my PCP agreed to handle pain management, and he has done a great job, but I still feel abandoned. I would like to discuss this with someone who knows more about it than what he looked up on the Internet.
Since then other doctors have told me that she was right and I should be glad that she was honest with me. Also once you have a diagnosis for insurance purposes they really limit additional testing. I would love to know how the arthritis in my spine has progressed but I may never qualify for another MRI.
I have a podiatrist and an physical therapist who are at least familiar with CMT, so tht helps. I can really empathize with what you are going through, but doctors want to "do" something and we make them uncomfortable. They can't cure us and they know we are suffering, but it reminds them that they aren't infallible.
http://more-distractible.org/musings...20to%20chronic
This gives a little perspective on the other side of this painful issue. |
It's too bad that you could not go on seeing that neurologist. However, as far as EMG/NCV testing for a person with CMT there is no reason for it after once being diagnosed. My support group was told this by an expert neurologist who knows CMT. You know, at least us CMTers know, that we are progressing. The test would only confirm that with the neurologist. So in that respect there was no need to keep on with the testing.
However, as I said, it is too bad that you could not still be seeing her. At least you have a podiatrist and a physical therapist who are at least familiar with CMT.