Marie

DSM3KIDZ - Thank you for welcoming me. I have 2 sons 13 and 9 and a daughter 11. I understand your lack of energy. That and being cold are the two things that annoy me the most. Being a mom to your kids is the best job you could have! Marie

Sunfish and Eillyre - Thank you for the welcome and information on mestinon. I will see my neurologist in a month or so to see it she will put me on it. I get the echocardiogram and adrenal test results in Sept. I have tried those heat packs for my hands. I use the gel heat packs at work because I can reheat them faster in the microwave. I have raynaud's in my entire body, so it is hard to keep warm at work while teaching. Dressing warm does not always prevent my raynaud's. If I dress too warm, I overheat because I do not sweat. When I take the layers off to cool off, it triggers raynaud's. Norvasc helps the raynaud's a bit. I am not as purple and blue. My neurologist also said I am cold because of the neuropathy. Thank you again for making me so welcome here-Marie

Janeeyre9- Thank you for the info. on asthma. I tried all asthma meds. when I went to a pulmonologist. I have cough variant asthma that is active all the time. I just cough a lot everyday and try not to use my inhaler. The albuterol makes me shake too much and it triggers my raynaud's which I have in my entire body. I take singulair, zyrtec, and rhinocort. They decrease the coughing slightly. I even took a drug that supresses the cough receptor in the brain. It does nothing for me. I have hypersensitive bronchial tubes. Just breathing and eating cause attacks. The funny thing is I don't have allergies, but anything triggers it. I am on zyrtec to help the sinus pain. Thanks again- Marie

Deb M. - I am sorry to read that you have been treated this way. I experienced the same problems. It took 8 years and 9 doctors later to get my asthma diagnosed. It has taken me 6 years and a misdiagnosis of thoracic outlet syndrome before I get my POTS, Raynaud's, and autonomic neuropathy diagnosed. I am 42. They are still doing more tests to see if I have some other syndrome. I had many doctors tell me it is stress because I am a middle school special ed. teacher and have 3 kids. The biggest perpetrator of that attitude was my OB. I kept going to doctors - I am fortunate in that my insurance does not require referrals. I eventually found a family doctor that believed I had real symptoms and insisted I keep going to new doctors. I have a sister with mental illness, so I often wondered if I was going - "crazy!" I suggest you read all you can on any possibilities for your symptoms. The doctors tend to stop patronizing you when you go in there knowing almost as much as they do and you are able to ask questions. When they do lab tests, find out what they are testing for and look it up on the internet. This will also lead you to illnesses that may cause your symptoms. One of my sisters almost died from neurofibromatosis on her spine. Her doctor told her for years she was overweight and needed to exercise even though she had lost weight and exercised! One day she woke up paralized and her organs were shutting down. The hospital just got an MRI machine. They said she had 2 days left to live before they found the tumor. They did the surgery that saved her life. Do not give up on being an advocate for yourself! Maybe your father could go to your office visits with you. Best of luck to you- Marie

MightyMouse - Congrats on you working on your Ph.D.! Where do you find the energy? I have taught middle school special ed. for 16 years. We teach multicatagorical, so every year I get a mix of kids with a variety of disabilities. Some of my fondess memories are of the kids who have autism. Have you attended an Atwood conference? I admire his determination and voice in educating others about autism. I am fortunate to be in a school district that supports educating teachers and other staff members about disorders such as autism. We have many parents that are great advocates for their kids. I wouldn't stay in this profession if it weren't for the kids with emotional disabilities to make my days both challenging and rewarding. I must say that my job is never boring! How ironic that we are in this profession and may need others to assist us in our daily living. I am so used to being the one to help others, I have difficulty even thinking about relying on others. That scares me more than the physical problems. Marie

Steph and MightyMouse, Thank you! You have all been so helpful. When I first started reading your postings, I was amazed to read so many of you had the same problem with others not understanding that you are ill, with some days better than others. I do not look ill, so it is hard for others to understand. Others understand better since I have a name(s) for it all now. Before, I was beginning to think I was crazy with the various symptoms I have had and been tested for over the years. Yes, I would love to clone my family Dr. He insisted I not accept my last two neurologists' explanations and go to another one. He will write me a referral to Mayo if I want one. Since my new Dr. worked with Dr. Low, I hope I won't feel the need to go to Mayo. I almost had heart failure when the Cardiologist she sent me to apologized for not helping me enough and giving me enough answers. It was my first visit! He found the slow message to my atria and ordered other tests. I feel like I won the lottery on doctors after going to so many! I am a special ed. teacher and I have 3 kids. Thanks- Marie

Another newbie here. I have been reading your postings for about a year and have finally decided to register. I would like to thank all of you for sharing your knowledge and experience. Through your postings, I investigated seeing Dr. Low at Mayo. By chance, my former neurologist referred me to a Dr. who used to work at Mayo with him. I have POTS, Raynaud's, autonomic neuropathy, and asthma. Like many of you I have my "horror "stories of misdiagnosis and endless lab tests for about 6 years. If I start it would take me days to get it all down!! My new neurologist has sent me to a cardiovascular Dr. It is astounding to me that no Dr. had done an EKG on me. He did and found that I have a slow message to my atria. He is testing me for amlydosis and adrenal problems. The neurologist wanted to make sure my heart was ok before putting me on Mestinon. My concern is that I have asthma and Mestinon is contraindicated in those that have asthma. Do any of you on Mestinon have asthma? I am also concerned that many of you on Mestinon are having adverse affects. The RX info. indicates that there is a medication the Dr. can prescribe for those affects. Have any of you tried it? To backtrack a bit - My family Dr. is a saint! He always believed my symptoms were real and said he would send me to as many doctors as it takes. My former neurologist asked me what I felt I had. I told her my autonomic nervous system and immune system were both taking a #@#. She said I think you are right and did the autonomic testing. I had been telling doctors this for years. I was diagnosed a year and a half ago. Norvasc helps the Raynaud's. I am less purple and blue, but I am still cold. The neurologist said if I am not cold from the Raynaud's, I will be cold from the neuropathy. I am also one who uses electric blankets and heating pads even in the summer. Thanks again!