Ernie

Hi Steph, I think that doctors are suppose to understand what a patient his describing because if we would be exactly able to describe the symptom there is a good chance that we already know the diagnosis. People have different personality and different way of explaining symptoms and decoding his part of taking the medical history. Please, don't feel guilty for who you are. Hugs Ernie

Hi, Four years ago today I got acutely sick. Started to faint every time I stood up. I had a busy clientele an active life and many friends. In a couple of months I lost all my clients because I could not work and they found someone else and I lost my friends because I could no longer follow them. 65 years olds have a more active and fun life than me! I always thought that I would work until 80 years old. Boy was I wrong! Yesterday I went shopping with my husband for clothing. It was the first time in 4 years that I was well enough to shop for cloth. (My husband has been doing the shopping all by himself for 4 years). I only went a couple of time in a wheelchair. So yesterday I took the wheelchair. Since it was snowing he drop me off in front of the store and went to park the car. I renewed a lot of my cloth because I was basically wearing the same things for 4 years. When you don't go out who care! Now that I am a little better I leave the house alone occasionally and I want to look nice. Our cart was full of clothing and I was pushing the cart and my husband was pushing me in the wheelchair. I don't have the muscle strength to push myself. When we got the the dressing room he asked for the disabled dressing room. The last client in line up looks at me and says: "The end of the line is after me!!" I answered: "I am disabled". She said: "I did not realise that". I answered while I was sitting in my wheelchair and pointing my wheelchair: "Yeah, it does not show". The employee came to help me with the cart and they wheeled me in the disabled cabin. The client put her hand on my forearm and apologised. I said to her: "It's OK." Then I was wheeled to the cabin and I just felt like crying and crying. It made me feel good that the lady apologised for being rude but my reality was that it was my first big shopping in 4 years, I was showing publicly that I am disabled (being in a wheelchair), and even then I was having a hard time. N.B.: Here we have a law that says that stores have to have a cabin for disabled clients and we have priority to use them. So the line up did not apply to me because there were no disabled in the cabin. Today I kind of feel emotionally numb. Last year I was at Vanderbilt at this time. I am glad to be home now. P.S.: I reread my post and I have a hard time understanding what I am saying. I hope you will be able to understand me better than I undestand myself today! Thanks for listening Ernie

Hi, Welcome to this wonderful group. I don't know much about your country, I am from Canada, so here I use the air conditioning in my house for 5 months. My car also has air conditioning and heat (of course)! I dress in layers so that I can adjust my clothing when I leave the house. Ernie

Hi AprilMarie, It's nice to hear from you. I am glad that your pregnancy is going well. Keep us posted on your progess. Do you know if you have a boy or a girl? Ernie

Hi Gena, Thank you very much for your encouragement. It's really nice of you. I did a Bachelor of Psychology to understand the "disorders" that doctors have given me for years, ie psychogenic, munchaussen, conversion disorder. I still have many wounds to heal from the mistreatment I had from doctors but having the right diagnosis makes a big difference. I now have respect from doctors! You know what the psychologist answered when I told him that 95% of my syncopes were when I was alone in the house? He said: "But you still have 5% in public!" I couldn't believe that he was so stupid. I think I have heard just about every crap that doctors and nurses tell us. I think they are thought to go by the book and if we have something they don't know then it does not exist. (I have just read Briarose story with her PCP and diabetes). I will always appreciate what Dr Grubb and Dr Goldstein have done for me. I don't know where I would be without them! We need other doctors like them and like Tearose suggested they should clone themselves!!!!!!!!! Ernie

Hi, I started fainting when I was a child and I thought that everybody fainted regularly. When I went to NIH I even argued (for 15 minutes) with the doctor that it was normal to faint. When he told me that he never fainted in his life I thought that he was pulling a joke on me. So I only realise a year ago that I was not "normal". For all the other weird symptoms that I have been having, doctors have always told me that it was my imagination or something emotional going on. I believed them because we are thought that doctors know it all! Then when I started to faint every time I stood up 4 years ago and was bedridden, doctors were telling me that I was doing it to get attention or that I was poisoning myself. I knew I was not poisoning myself so I was wondering why I would do it for attention when 95% of my syncopes were when I was alone in the house. During the 2 years that I was bedridden I never totally realised that I was really sick because doctors had convinced me that I was making it up. The positive side was that it kept my spirit up because I thought that one day I would stop needing attention. The downside was that it took so long to get diagnosed that now I am disabled and will never be able to work again. Then when I went to see Dr Grubb he gave me a real diagnosis and it was such a relief to learn that I was not imagining it or creating it myself. Then when I went to NIH I learned that my dysautonomia was genetic so there was no cure. The funny thing is that when people ask me what I do for living I answer: "I am diabled" with a smile and proud of myself. I know that "disable" is a stigmatised word but not for me. It is because I finally have a diagnosis after 30 years of being told that it was all in my mind and I am now free from this guilt and shame I have had all my life. Now I am working on reconstructing my life with my new limits. I still want to be useful to society and I am taking steps toward it. Each day is a challenge and when I go to bed at night I am usually satisfied with myself. I hope that one day researchers will find my genetic mutation and medication to treat it and others like me. I hope that other people will benefit from protocols I have been involved in and that I will have helped science make another step to help all of you my cyber family. Hugs Ernie

I agree totally with your suggestions Tearose! Ernie

Hi Briarose, Thanks for explaining. So if I understand correctly your mom was trying to encourage you by saying that psychiatrist have a lot of personal problems because they have the highest suicide rate. I'm probably off topic but I always wondered how do these guys manage to keep their sanity when they have to deal with people who have psychosis (schizophrenic, etc.). I mean the doctors who work at the hospital and see them all day long. I know I would not be able to handle it. I was a psychotherapist for more than 10 years and never had very severe cases. But for me the most difficult cases were the ones who were highly suicidal. I got very stressed out and could hardly sleep at night. I would not have wanted any of my client to commit suicide. Ernie

Hi, I would ask my doctor to send me for a TTT. Ernie

Hi I am sorry but I do not understand what is implied in your mother's answer. Would it be possible to explain? Thanks Ernie

I am sorry Briarose for the poor treatment you received from your doctor. These doctors with their big egos cannot just admit that they don't know what we have. They prefer to tell us it is between our ears. I understand your frustration. Ernie

Hi Sarina, Welcome to our nice family! I am sorry you have to deal with this disorder at such a young age. I was not aware that a school could make you leave because you are sick. Maybe the regulation is different for private school but you could always check it out. Ernie

Hi Julia, Sorry you are having such a bad time. I hope you get the soluction soon! You can have been driving your car on automatism. Many people do that and it is normal. I would not worry about it. Ernie

Hi Merrill, I think that you have to try both of them and see which one is the best for you. Ernie

Hi Jessica, Thanks for the update. I was starting to worry about you. I hope you start to feel better soon and get back to your usual life. Ernie

I am more like his twin brother. Ernie

As suggested by the others I would not wait to get in NIH to try new treatments. NIH is great, the employees take good care of us but a year is a long time to get appropriate medication. This was my best medical experience of my life. I would go back anytime. Ernie

This is my miracle drug. Cannot remain upright without it. Only side effect is goose bumps and more sensitive to cold weather. Ernie

Hi Dr Grubb, Thanks for the good care you provide us. Now it's time to take care of yourself. Don't forget that you are very very important. We want to keep you for a looooong time! Don't overdo it. From the French Canadian girl. Ernie

Hi, Good luck with your visit. I'll pray that you get the information you need and that you have a safe upright trip. Ernie

Hi Dawn, Congradulation on your acceptance. I know how hard it is to get in. I have a friend who is there presently and she says the doctors are nice to her. She also got in by the back door. I think that the most important thing is to get in and once there you manage your way through. I heard that they do thorough testing. Good luck and congradulation again! Ernie

Hi, I would go ahead with the endo. This way you can eliminate causes. Ernie

Hi Blackwolf, I am sorry you are under such terrible pain. Maybe the stress that you have had lately triggered this episode. I don't know what is causing the muscle pain but when I am out of salt or BB it gets really bad. My vitamin cocktail also helps. Ernie

Hi, This just infuriates me. It seems that criminals have more respect than we do. I think the justice system is pretty sick. Ernie

Hi Blackwolf, I am glad that you pulled through this even *** honors. You surely deserve an emotinal rest. Take care Ernie