crowebirds Posted December 10, 2010 Report Share Posted December 10, 2010 We had a really good appt. This is the first that we didn't spend an hour explaining everything about TLC's issues; I had a list of symptoms which he referred to. He didn't attempt to challenge my intelligence like previous Neuro did. He said that all of her symptoms pointed to the same thing which is damage to her Autonomic Nervous system. He believes that it is not genetic and that it is from damage somewhere along the pathway. It is affecting the entire autonomic system so it has to be close to her brain.He said that it is similar to RSD-Dystonia, but said that it is not muscular. He thinks that she needs a type of therapy which will numb her to some of the pain. If it works, it will help reduce her heart rate which in turn will make it possible to go off of her heart med and change to a pain med instead.He is going to have her do a sleep study because she is so tired all the time. He will also do some other tests to see if she has something called Porphyria and Heavy Metal poisoning. He wants to rule them out.He will see her again in four months after all the tests are done. He also said that she does need to go to the Mayo clinic in Minnesota for more specialized testing. He said that they would be able to find the exact location of the damage.Whew, finally!Robin Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted December 10, 2010 Report Share Posted December 10, 2010 I'm so glad that you finally got someone to listen and help, that must be such a relief. I hope that they are able to sort this out with you as soon as possible. Please let us know what happens. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted December 10, 2010 Report Share Posted December 10, 2010 Hi Robin~How interesting...I have never heard of a doctor that could find the specific site of damage to the brain. You'll have to tell us more about that as you learn...Also, I don't know where you live, but there's also an autonomic specialist with the Mayo Clinic in Scottsdale, AZ. I see him, and I think he's great! He just moved from Rochester back to AZ.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
crowebirds Posted December 11, 2010 Author Report Share Posted December 11, 2010 I'm so glad that you finally got someone to listen and help, that must be such a relief. I hope that they are able to sort this out with you as soon as possible. Please let us know what happens.I am very curious about your signature. You show that you have cholinergic urticaria and dermatographism. Have you been able to identify a link between those two and your DYS? My daughter also has Cholinergic urticiara and dermatographism, she also has a severe case of cold induced urticaria. Her immunologist believes that they are related.Thanks,Robin Quote Link to comment Share on other sites More sharing options...
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