Recent content by qualitybabe823

Don't give up Angelman, it has taken over 3 years for me to get this great news, don't give up hope, without there is nothing. My prayers are with you for good news!

Mayo Clinic Results Well, I went to Mayo clinic, I think it's the best thing I've ever done. They were very thorough. I had 5 days of intense testing. Multiple EMG's, Nerve Conduction Studies, Autonomic testing. They pulled my father's records, he had ALS, but they do not believe that it was...

Thank you Thank you for the kind words of encouragement. It is hard to keep it off my mind, and my job is asking questions about what I can physically do and they want answers from my doctors, which makes it much worse. I will update when I return.

Getting nervous Well, my week at Mayo clinic is 1 week away and the anxiety is starting. I have good days and bad, one day I am optimistic and then I go the complete opposite direction. I now am having periods of incontinence, which is very embarrassing to say the least. I wear a pad just in...

I just wanted to take a moment and wish everyone Happy Holidays and lets hope that the new year ahead will bring some more breakthroughs towards stopping this dreadful disease in it's tracks!

Thank you for sharing that with me. I have a deep faith in the Lord that he will take care of me, no matter what. Do you know what it's like when you feel deeply that something is drastically wrong? I took care of my father who had Bulbar onset so I lived it with him, he never talked about...

Pop rocks is exactly how I describe it, I get it in my tongue and in my throat.

I understand completely. It's very frustrating, you get to the point that you just want some answers. I find that if I am tired or stressed out, my symptoms get much worse, the key is trying to put it out of your mind and relax, (yeah right). Hang in there.

I understand what he is going through, I have been trying for 2 years to get a diagnosed. It is so very frustrating, you don't know what to tell people when they ask what is wrong and unless you are going through it, they don't want to believe that it takes this long for a diagnosed. My...

I have been seen by a neurologist for 2 years, it started with my legs, stiffness, hard time controlling my gait, I have to think about walking. I have foot drop in both feet and my feet used to cramp all the time. THe cramping has stopped, I have numbness on my left foot, it involves 3 out of...

I am hoping someone can help me out with some information. I have an appointment at the Mayo Clinic in Rochester, MN with Dr Sorenson on Jan 28. I have a new symptom that has developed in the past 2 weeks. It is getting increasingly hard for me to chew food. My lower jaw gets fatigued and it...

Temperature Regulation Have any of you at Autonomic testing done? I have been through it, your autonomic nerves are the ones that control temp regulation in your body, if they are not working correctly you get intolerant to cold or heat, depending on how they react. THey do this through the...

I guess I wanted Mayo because that's where my father went and if they needed to check family records, they already have them there. I have thought of some other places, I just want to make sure that where ever I go, they know what they are doing.

Mayo Clinic Which Mayo clinic did you go to? I am looking at the one in Rochester, MN. My father went there after 2 years of testing at University Hospital and Clinics in Madison, Wi and they finally gave him his diagnosis, that's why we were thinking of going there?

To All of you I felt so alone until I stumbled onto this website, here I feel I belong, I don't have to make excuses for how I feel ........that's a gift in of itself! Thank you to all of you for sharing your thoughts, feelings, symptoms, just everything. I know that I can share feelings here...