Ernie

Hi Mary, I am sorry you are having a hard time get diagnosed. I had a doctor, the number one syncope specialist in Canada scheduling me for a TTT and sending the report to my GP saying that I had Munchaussen without doing any tests. Just is gut feeling. Then when other specialists called him to get his opnion he would tell them I had Munchaussen so no other doctor took my case. I had to go to NIH go get diagnosed and now I am followed by Dr Grubb. I don't know if he treats MSA patients.

Hi Heather,

Hi Melissa, Thanks for the link to the forum. I looked at it and I like it very much. I think it will be helpful for me.

Hi, Thank you for your continuous support and suggestions

Hi, My personal opinion is that when someone says: 'I have no choice but to work' they mean that they have financial obligations and still have the physical and mental capacity to work even if they have to make some sacrifices (ie cutting down on social life, etc.). If our health deteriorates too much then there comes a time when 'I have no choice but to work' has to be reassessed and the person has to accept to loose financial benefits and many non financial benefits. Most of the time our health declines slowly, as opposed to someone who has a car accident and is made disabled overnight. So for some time, maybe years we can push our body, but for some of us the invevitable is there right in front of us one day or another. Even after years of not being able to work we still feel guilty because our society values our worth or identity on our job or accomplishment. So it's a touchy subject for those of us who would to love to work, earn money and have a life or have their life back.

Hi, I live in Canada and there it is the Provincial government that pays long term benefits. I was self employed and since the doctors had always told me that I was healthy even if I kept telling them that I had a problem I never took personal insurance because it is way way expensive. So I just have a small pension that I cannot live with all alone. Right now, it's been 5 years so the government is re-evaluating if I am still disaabled. It started in June and I won't get an answer before January to March.

Hi, I am glad the bad experience is behind her. I hope that she will recover soon.

Hi, If Vandy says both diagnosis then I would ask my doc to treat me for both.

Hi, I think that sometimes it's hard to get a clear cut diagnosis because either your symptoms are your result are not clear cut. Sometimes your result are clear cut but the doctors don't know enough about the disorder to be able to diagnose it. I would say to try the meds for POTS and see if it works. Did Vandy say you have POTS?

Hi, I am very sensitive to meds. When they help me I feel it within 15 to 30 minutes. When they make me sick I feel it even faster. In my case, when a medication makes me feel worse from the start, it will never help me.

My Dear Friends,

Hi, I used to faint everytime I would have a bowel movement or urinate. That's why I am always put on bedpan when I am in the hospital. I hate it!

Hi , I keep my originals divided: hospital, date Then I make a photocopy of all the positive tests that prove that I have a physical disorder and carry it in my purse: ie TTT, blood volume, catecholamine results. Hope this helps.

Hi, I know some people have POTS because they have too many heart receptors which causes the tachycardia and others also have POTS because their heart receptors are too sensitive.

Hi, The quantity of isuprel they give generally does not affect a normal person. With us it causes vasodilation and our body cannot compensate. So it accentuates your symptoms and may make you faint. It can sometimes give a false positive so some doctors do not use it and prefer to do a TTT that will last 45 to 60 minutes.

Hi,

Hi Julie, Thanks for taking the time to do research for me. I think I will go ahead with the traditional colonoscopy because my doctor wants to do a biopsy. My niece had an appointment with our researcher on the following day of my scheduled colonoscopy and she just emailed me today to tell me that it has been postponed. I always accompany her to the appointments. This will cause less stress on me because she comes to sleep at my place and I go with her. Now I can take all the time for me to recuperate.

Hi, Welcome aboard. You can do exercises supine or do pilates.

Hi, My inspiration is my mother. She had a severe heart disorder which should have killed her at birth. She travelled all around the country to get medical help. She survived the oldest of her generation (of 13 years) with this disorder. She showed me how to be a fighter and survivor and to never give up even on bad days. She died at 34 years old 2 days after an open heart surgery.

Hi, Xanax and other anti-anxiolotic meds

Hi Melissa, I am completely with you and feel the same way. I admire you for standing up and posting it. I have no choice but to work myself and kept passing out on my clients. I had to stop working because nobody likes to see a therapist who passes out on them! I had no choice but to cut on my spending and I lost a lot of financial privileges. If it would only be a matter of will, I would also continue to work but my body just does not want to follow my wishes.

Hi, Some patients pass out sitting. Some don't faint but have bad cognition skills that don't permit them to drive.

Hi, Dr Grubb

Hi, I have the same problem and the cardiologist never found anything wrong with my heart. I cannot carry more than 5-8 pounds otherwise I faint.

Hi, I really appreciate this forum because members are compassionate, generous and helpful. Also there is no bullying tolerated.