Hi everybody
I thought I would share my very good experience at the MDA ALS clinic in Rochester, NY on Thursday.
My appt lasted from 9:30 am until 2:30 pm with a lunch break from 11-12! I had a doctor entering the neuromuscular specialty and two specialists. The fellow (meaning finished med school, finished interning, finished everything and now finishing his specialty, neuromuscular) spent every minute except lunch with me. The other two docs checked in from time to time and one of them even repeated the exam.
My EMG was clean! Great news! The only negatives were brisk eye reflex (something I had never heard of). The doc mentioned it as they kept shutting off the lights and doing it over. No jaw reflex (have no idea what that means as far as diagnosing someone and was too happy to ask).
At the end I was given medication for neuropathy and an appt. to come back in 6 weeks. I think they want to recheck the eye reflexes. They did note the muscle spasms. I had an excruciating cramp when they inserted the needle into my calf muscle. It took a good ten minutes to calm it down. I had a 2 1/2 hour EMG/NCV because they checked my "channels." Someone on this forum, I think it was Conrad, mentioned Isaac's syndrome to me and by gosh that was what the doctor was suspicious of. The nerves did not show this, but they are going to check blood tests for it when I go back.
I have never been tazzer gunned, poked and electrocuted so much in my life! But, so far I am happy. I don't have a diagnosis, but I don't think I am going to die from whatever is happening to me. My life is different, it is sick, but it isn't going anywhere as far as I know! And this great group of docs, I really believe, will find out what is going on. What a caring group. I hope all of you will find docs like this sometime during your illnesses. I hope these docs see it through and really find what is going on with me, not only so I can get treated, but so none of my kids ever have to suffer from whatever it is. Leslie
I thought I would share my very good experience at the MDA ALS clinic in Rochester, NY on Thursday.
My appt lasted from 9:30 am until 2:30 pm with a lunch break from 11-12! I had a doctor entering the neuromuscular specialty and two specialists. The fellow (meaning finished med school, finished interning, finished everything and now finishing his specialty, neuromuscular) spent every minute except lunch with me. The other two docs checked in from time to time and one of them even repeated the exam.
My EMG was clean! Great news! The only negatives were brisk eye reflex (something I had never heard of). The doc mentioned it as they kept shutting off the lights and doing it over. No jaw reflex (have no idea what that means as far as diagnosing someone and was too happy to ask).
At the end I was given medication for neuropathy and an appt. to come back in 6 weeks. I think they want to recheck the eye reflexes. They did note the muscle spasms. I had an excruciating cramp when they inserted the needle into my calf muscle. It took a good ten minutes to calm it down. I had a 2 1/2 hour EMG/NCV because they checked my "channels." Someone on this forum, I think it was Conrad, mentioned Isaac's syndrome to me and by gosh that was what the doctor was suspicious of. The nerves did not show this, but they are going to check blood tests for it when I go back.
I have never been tazzer gunned, poked and electrocuted so much in my life! But, so far I am happy. I don't have a diagnosis, but I don't think I am going to die from whatever is happening to me. My life is different, it is sick, but it isn't going anywhere as far as I know! And this great group of docs, I really believe, will find out what is going on. What a caring group. I hope all of you will find docs like this sometime during your illnesses. I hope these docs see it through and really find what is going on with me, not only so I can get treated, but so none of my kids ever have to suffer from whatever it is. Leslie