qualitybabe823
Active member
- Joined
- Jul 25, 2007
- Messages
- 46
- Reason
- Learn about ALS
- Country
- Uni
- State
- Wi
- City
- Watertown
I finally got a diagnosis, not sure if I fully understand what it means at this point though. I had a number of tests done after the negative EMG was done a number of weeks ago. These tests were aimed at testing the autonomic nerves. It did show that this group of nerves is being affected. My doctor explained that I have a rare inherited form of an autonomic nerve disorder, although he has not given it a name as of yet. He believes that my father had this same disorder, even though he had been diagnosed with ALS. He believes he did not die from ALS, but rather this disorder. I know when my father was going to the ALS clinic at the time trying to get a diagnosed, the doctor did not want to give him the diagnosed of ALS, he kept saying, your symptoms do not fit in place like I would expect them to. My doctor feels that he was seeing what I am experiencing, same types of symptoms, but with the wrong set of nerves in the body. This disorder affects the nerves you have no control over. So far it has affected my liver, pancreas, bladder, heart, intestines and sweat glands. In fact, the small fiber nerves that operate the sweat glands in the lower half of my body no longer work at all. Bad thing about all this is I cannot seem to find much about this on the internet. It's all so vague.....so it's not too convincing either. It leaves me very depressed, mixed feelings, angry that this is happening to me, if my doctor feels my father passed away from this and I have it, is this supposed to make me feel better, just because he does not feel my father had ALS? He also wants me to talk to my other family members because he beleives there has to be others with this same disorder in the family. He explained that this is something that is extremely rare and I should be very happy that they found it. He seems excited and wants to check us all out. I can't be excited about something I know so little about. I am so depressed, and I don't know if it's the Topomax he has me on making me this depressed or just the shock of the diagnosis and trying to accept it. There is no cure, I am told that stress accelerates it, great..............how do you manage that! I feel cheated, so so cheated, I've been a good person all my life, did what I've been taught, took care of both my parents so they could die in their own home, and now I have to deal with this. Why....................THis is so unfair to my family..............I'm sorry, you all have so much more to worry about It's just that I don't know where else to turn,