I was wondering if anyone could give me a word of advice or encouragement. I have all the symptoms of KD, and I've been seeing a neurologist. They've taken three rounds of blood, including some for a chromosome test.
I told my doctor that when I was a teen I had gynecomastia in both chests and had a mastectomy on one. Still he's not listening and wants to do a muscle biopsy. I asked him to wait until all the bloodwork comes back. I've also had EMG and I have damage to my nerves in my legs.
I didn't come out point blank and say are you testing for KD? Should I have? I think gynecomastia and the rest of my symptoms would be a smoking gun. Should I call back and ask him if he's testing for that?
I'm frustrated because of this waiting when I know it can't possibly be anything else because of the symptoms such as gynecomastia. How many neurological diseases feature that?
Location: Grande Prairie,Alberta,Canada
Hi, I beleive some of these steps are unnessasary. As for me they did the emg, muscle biopsy,then the bloodwork. When the clinic did the bloodwork they didn't count the repeats, as i believe in my studies of this ilness that is important to the patient. Still not sure why the muscle biopsy was done ahead of the blood work. Talk to DR. I hope this helps in a way that we can all get an answer.
I would definitely ask if he is testing you for KD. As you say, the symptoms point in that direction, but depending on the doctor's knowledgeability, you may have to lead him.
Location: San Luis Obispo CA
The test for KD is very specific - other "chromosome" tests nor blood test would afford a diagnoses of KD.
A better KD smoking gun would be similar symptoms on your mother's side of the family tree.
My guess is, given the scatter of tests, you have very good insurnace.
email:rheitzman at gmail
The test for KD is a DNA test and very specific. It checks for the number of CAG repeats. If your doctor is not aware of this test, he can go to our website or you can print the information for him. We still find today that many doctors do not know of this specific DNA test. DNA Test
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614