Sheila1366

The vidoe posted here was very helpful. Thanks for posting it.

I was suppose to see Dr. Caroline Klein at UNC Chapel Hill but found out today she has been on medical leave for a year and not coming back anytime soon. So her secretary is suppose to call me back and will refer me to a neurologist that does autonomic testing. There's not one at UNC that does this testing. Wondering who I will be seeing now and just how far away it will be. I live in NC. Any idea of an autonomic specialist in this area?Thanks.

Thanks everyone for the welcome. So happy to have found this group. My diet is mostly liquids. I was able to tolerate a liquid protein but now I am getting sick with the lactose free milk. At this point everything makes me hurt so bad and I am always sick. My new motiltiy dr. has me on remeron. It helps some with the nausea. Zofran , unfortaunately has not helped me in the past. So I depend heavily on liquid phengran. My family dr. has mentioned a feeding tube but I am trying to keep away from them if I can. But If my life depended on it, will use them. Have many friends on them already. Just scares me cause of the infections that seem to be a real issue with tube feedings. Waiting on my new wheelchair to come in. Just so weak. Lack of food and I think my autonomic system just going down hill, I am having the worst time getting around. I will be seeing a new pain specialist soon. My Gi dr. mentioned a celiac blaock in my back to help with the pain. I am up for anything at this point. Just seems that I am getting worse everyday. I will have a few days where I just feel bad then weeks of feeling so bad I feel like I am not gonna make it. Hope that one day there is a cure for motiltiy disorders and autonomic disorders. (((((Thanks again for the support))))))

I also have hypoglycemia. So far we feel it is due to my motiltiy disorder and the lack of food I take in. But I wonder if it is more to do with my autonomic system going downhill. It is very hard to manage.

I was wondering if others have fibromyalgia? I have been having more all over pain lately. Also have terrible pain in my midsection due to my motiltiy disorders. Just wondering how common is all over pain with dysautonomia and is it fibro. or something else? Thanks.

I am so weak. With my motiltiy disorders, getting in enough calories doesn't help my faitgue. But I have noticed that my heart rate will get very fast when upset, up walking or even when I am just sitting. Last night, I got upset. I stood up and suddenly got this intense pain in both ears, my face got very numb also. I went to bed as soon as I felt this come on and went to sleep pretty quickly. Never had the pain in my ears before when I felt lightheaded. Was wondering if anyone else had this problem.

Can anyone tell me how to get the picture to download? Thanks.

Hey, my name is Sheila. I am new to the forum and so glad there is support out there on the web. I was diagnosed with dysautonomia in 2008. Also was diagnosed with gastroparesis the same year. But not til 2010 did everything start to become very serious. My motiltiy problems have become much worse. I am down 70 pounds so far( good thing I was overweight when I got real sick). Have had many tests on my digestion system and found I have moderate GP, severe colonic inertia, pelvic floor dysfunction and possible Hirchsprung's disease. And now have this wonderful pain called proctalgia. Because of the low food intake I now have hypoglycemia. I am seeing a new motiltiy dr. now and he is refering me to Dr. Klein to have my autonmics system rechecked. Along with my motiltiy problems my bladder is also losing some of it's function. My heart is out of rythm at times and can beat very slowly. I had a tilt table in 2008 that I failed. I feel awful all the time. Right now on top of my constant stomach pain, my fibromyalgia is in full flare. Nausea is getting much worse also. Just not having alot of fun right now. So looking foreward to making new friends that I can share with and get support. Thanks for adding me to the group, Sheila