Can someone provide a directory of neurologists in the country who are aware of and/or are at least willing to study this syndrome? Rather than we who have this syndrome trying to hunt for the "needle in the haystack" of neurologists who won't just say, "Well, it isn't ALS so don't worry about it" or "nothing we can do, learn to live with it." I understand its rarity makes it difficult to know what to do, but we could use some compassion and not just be dismissed. I am also confused as to why many of the tests are inconclusive or don't register a positive reading when it is obvious this is going on. I am hesitant to proceed with expensive tests that are hit and miss and with some doctors that really don't understand this syndrome or who don't want to spend time trying to understand it. No disrespect intended, it is just very confusing and demoralizing for us. Thank you.
I need a Dr like him. I have so many terrible symptoms that have worsened in the past year. But none of the drs I've had seem to care,don't believe me or they just give up. I'm trying not to give up but I need a Dr that will also not give up and believe in me.
Thankyou Doctor Kadry....I know from my own experience these conditions have and do sometimes takes years of costly testing and misdiagnosis. Thankyou for highlighting this disease. please come to the Isaacs Syndrome forum this is a patients support and information forum just google Isaacs syndrome forum
Can someone provide a directory of neurologists in the country who are aware of and/or are at least willing to study this syndrome? Rather than we who have this syndrome trying to hunt for the "needle in the haystack" of neurologists who won't just say, "Well, it isn't ALS so don't worry about it" or "nothing we can do, learn to live with it." I understand its rarity makes it difficult to know what to do, but we could use some compassion and not just be dismissed. I am also confused as to why many of the tests are inconclusive or don't register a positive reading when it is obvious this is going on. I am hesitant to proceed with expensive tests that are hit and miss and with some doctors that really don't understand this syndrome or who don't want to spend time trying to understand it. No disrespect intended, it is just very confusing and demoralizing for us. Thank you.
I need a Dr like him. I have so many terrible symptoms that have worsened in the past year. But none of the drs I've had seem to care,don't believe me or they just give up. I'm trying not to give up but I need a Dr that will also not give up and believe in me.
Thank you for the information, Dr. Kadry. Because it is very rare, there is little information available on Isaacs syndrome.
Thankyou Doctor Kadry....I know from my own experience these conditions have and do sometimes takes years of costly testing and misdiagnosis.
Thankyou for highlighting this disease. please come to the Isaacs Syndrome forum this is a patients support and information forum just google Isaacs syndrome forum
Seems like a great and empathic doctor. Empathy often lacks with MDs.
Thank you