Marie

Dayna, I know what you mean by her bedside manner. She is all science and little social skills. In talking with her on my second visit, she was better. I tend to be sarcastic in my humor about my health. She loosened up a bit and gave me a pep talk about not giving up. I like her because she talks to you intelligently and is not willing to give up. I have been seeing her for about two years. She did additional tests that Froedert did not do. Before trying mestinon, she wanted me to see a cardiologist, so she called staff in cardiology that she knew to make sure I would get Dr. Rothe without having to wait several months. Dr. Rothe is awesome. He explains everything and asks your opinion. He gave me his personal office number because I have a hard time trying to get appointments through Froedert's scheduling system. Dr. Dotson may not be very social, but I like that she is so focused on the medical issues. She has helped me by piecing together my medical history and tests to confirm Dr. Barboi's diagnosis. Dr. Barboi diagnosed me based on the tests Dr. Book ordered, but I never saw him. She eliminated other syndromes by doing additional tests. She also sent me to a cardiologist, which no other neurologist did. This was also a precaution before I was to go on mestinon. She will give me a prescription for mestinon when I request it. I am still weary about the initial side effects. Good Luck! Marie

After my diagnosis, Froedert sent me to Dr. Rose Dotson. My doctor had originally requested Dr. Barboi. They gave me to Dr. Book. After my diagnosis, she said it is not her area and none of the neurologists there felt they could help me. A friend of mine had Dr. Barboi remove a tumor on her auditory nerve. She really likes him. He surgery went very well. I wish you well! Marie

Bee, I have autonomic neuropathy and Raynaud's. This year, jaw and neck have been tightening up. I have asthma, but it does not seem to be the reason. The surface of my tongue goes numb for several weeks at a time. When I have one glass of wine, my lips and tongue go numb everytime. The doctors do not know why this happens. My hands and fingers tingle all the time from the Raynaud's and neuropathy. Marie

I am sorry to hear about your difficulties and I hope whatever decision you make it helps you feel better! I had a hysterectomy at 37 years old. I am 43. I have 3 kids. I have not had a migraine since my surgery. I was up to 1 - 3 a week. I still have my ovaries and they are functioning normally. I ended up with endrometrial hyperplasia, a fibroid, and my uterus fell. Because of the autonomic neuropathy and all that goes with it, I am still fatigued, but not quite as bad since I am no longer anemic since my surgery. I asked my doctor about ovaries not functioning a few years after surgery. She said that it is not common for the ovaries to stop functioning. I had mine tested after five years and they are fine. Marie

I have Raynauds in my entire body. My hands turn purple, blue, gray/black, and white. Since going on Norvasc, they turn colors less often and they have not turned gray/black. They still turn purple at times throughout the day, but not as often or as dark. I teach, so the kids and adults were freaking out at the color of my hands. Now, I do not have to hide my hands as often. I also had very weak arms and tingling in my hands and arms. On some days, I could not even hold a book in my hand. I have not had weakness in my hands or arms since being on Norvasc. I take Norvasc twice a day. My neurologist said I am still cold because of the Raynaud's and/or autonomic neuropathy. The Norvasc is supposed to stop the blood vessels from being rigid and constricting so much. Norvasc does not lower blood pressure if the person has normal or low blood pressure. I am also less dizzy on the Norvasc. Every so often I try to stop taking the Norvasc, but all of my symptoms come back. The neurologist said she is not sure if the Raynaud's has to do with POTS/autonomic neuropathy. Good Luck, Marie

Sara, I see Dr. Rose Dotson in Milwaukee, WI. She has worked with Dr. Low at Mayo. They also send her difficult to diagnose patients. I went to The Medical College of Wisconsin/Froedert at first. Dr. Dotson helped develop the Autonomic Testing Facilities there. They sent me to her because my symptoms like so many of us are so unusual and their neurology dept. did not feel they could help me any further. The hospital put me through 10 months of tests. She found that there were a few they did not do and she sent me to a cardiologist who discovered I have a slow message to my atria. Over 8+ years of symptoms and different diagnosis's, she at least had a few answers and is not willing to give up. I have autonomic neuropathy, orthostatic hypotension, asthma, and raynauds in my entire body. I have many other symptoms which come and go. I wish you well on your quest. Please remember to never stop looking for answers, research, and ask as many questions as you can! Take care, Marie

Sue, Welcome! You will find a lot of support and information here! I am sorry to read that both you and your daughter are having so many difficulties. I am also a teacher. I teach special ed. in a middle school. Our jobs can be very stressful. Please take care of yourself. It is hard for others to empathize with us when we do not always look as ill as we are. I encourage you to engage in discussions with your principal that your illness is not as treatable and understood as others may think. Be careful in using the term episodes. Many people will interpret that as primarily an emotional problem. Sorry if I am getting preachy, but I hate politics and education is so political. In my mind, the anxiety we experience does not make us so ill we cannot work, it is all of the physical symptoms we have that have ineffective treatments or are not understood. I have had the most luck with a cardiologist who specializes in electrophysiology and a neurologist who does not focus on anxiety. Stick with it and keep asking for answers. It took me many years and many doctors to finally get diagnosed. Take care, Marie

I also see Dr. Dotson. The Medical College of Milwaukee Neurologists sent me to her because they ran out of ideas! They all met and decided no neurologist there could treat me. She was a principal player in getting and setting up the autonomic function lab at The Medical College. I have autonomic neuropathy and raynaud's with a lot of other funky symptoms. She gets patients from all over that are hard to diagnosis. She discovered that several tests were not done that I should have had. She also sent me to a cardiologist as a precaution before putting me on Mestinon. She made sure I got the Chief of Cardiology. He found that I have a slow message to my atria, which of course, after many tests cannot be explained as so many of my symptoms have been. She will spend time listening you! After many years and many doctors, I finally found a great neurologist! I haven't gone in to try the Mestinon yet. Take care, Marie

A nutritionist could help you figure out the needed calories you need per day to lose the weight and maintain your weight loss considering your difficulty in exercising. It may be paid by your insurance if your doctor recommends it. My husband and I went to one for his weight/diabetes. I had previously lost 40+ pounds on my own by eating healthy after having 3 kids. The nutritionists have rubber food samples of portions. I wish I had a set for my own kids to see. You would not realize how little you really need to eat. For being 6 foot 3 and large boned, my husband is supposed to eat only 1,800 - 2,000 calories a day! Being smaller, I need only 1,300 - 1,500 calories a day. I am not a crazy calorie counter. I just read a calorie guide to get an idea of calories and fat content and estimate how much I should eat. You may also want to check out the book, The Glycemic Revolution. Take care, Marie

Amy, I have Raynaud's in my entire body and autonomic neuropathy. I use gel packs or rice packs you can heat in the microwave to help keep my hands warm. I have been mostly using a large heating pad because I am cold so often and all over. When I am at work, I use the small size gel packs for my hands. Good luck on your quest to get warm! Take care, Marie

I have autonomic neuropathy, raynaud's, POTS, and asthma. I didn't get asthma until my 20's. Then, in my 30's, I started getting dizzy many times a day and had tingling and purple/blue/white in my hands and fingers. I also had weakness in my arms, stopped sweating, and was freezing all the time. I was misdiagnosed as having thoracic outlet syndrome. It took about 6 years and many doctors to get the right diagnosis. I am seeing Dr. Dotson who worked with Dr. Low. She is continuing to try to find the cause, but feels it was probably a virus. She is the one who sent me to the cardiologist and the slow message to my atria was found; although, there is not treatment for it. I wanted to see Dr. Low, but my insurance does not cover Mayo or Dr. Low. I though I would give one more Neurologist a try. I was so happy when I found out she had worked with Dr. Low. I hope you find the answers you are searching for! Marie

DizzyGirl, I have what I call vision shifting. Everything I see shifts 90 degrees to the right. My vision is perfectly clear. It is like being in a Fun House minus the fun! My body flys to the right and I lose my balance. I landed on one of my students once. It only lasts a few seconds. Then, I get a weird feeling in my head for awhile. I also see and feel my environment shifting right to left repeatedly. My vision in clear with this also. This only happens when I am standing, but when I do my blood pressure and heart rate right after, they are fine, even though I also have a slow message to my atria. The neurologist, opthoneurologist, and cardiologist have no clue what is causing it. I do not have Vertigo. As my cardiologist says, he believes me when I say I have these weird symptoms that come and go because neurology is a crude science and they just do not know much about it! Do not feel like you are crazy! I hope this does not continue for you! Marie

My sister is an occupational therapist. She used to make rice heating pads for her patients. You use rice. I made my own and would use it at work for my hands. You just heat it up in the microwave. The only drawback was that my classroom smelled like rice! They do work. Marie

Madwife, It sounds like you made your decision based on the information you had. That is all a person can do. Do not be judgemental of yourself for that. You have a wonderful job helping babies to be born healthy and safe. I admire you for that! Take care, Marie

Bamagirl- My emg tests on my arms, hands, neck, and back muscles are normal, yet I have extreme weakness in my arms and numb/tingling fingers. My hands turn black, blue, purple, and white when cold and red and burning when they are warm. It took years for me to be diagnosed. I am on my 5th neurologist. Finally, I hit the jackpot! I have Raynaud's in my entire body (more severe in my arms and hands) and autonomic neuropathy. Autonomic neuropathy is diagnosed through a tilt table test and sweat test. Did you have these tests? My autonomic neuropathy is affecting my blood vessels and heart which can cause such symptoms. Now, I have a slow message to my atria which they cannot find the cause (Head of Cardiology). Have you had tests for peripheral neuropathy? My mother has it in her legs and feet? Maybe you should get a second opinion. Take care, Marie

WI Mom, I am a special ed. teacher in Wisconsin. If your child qualifies for special education under Other Health Impairment and her disability prevents her from going to school, she is serviced through special education. Students are provided an education at home by a teacher the district hires. I have also had students go to school for half days or just a few hours, then be taught at home also. We have also had a student video linked to one of our classes. If they say they cannot provide the elective classes at home, could she make it through the elective classes at school and do the rest at home? To get her evaluated for special education (if you haven't already), you need to contact the school's guidance counselor and ask for an evaluation for special education in the area of Other Health Impairment. When they give you the Parent Rights information, there is a number on it you can call to have an advocate go with you to the meeting. They have 60 days to do the evaluation after the form is filled out. Also, it is of benefit to have her serviced through special ed. through high school because if she is accepted by a federally funded university and informs them of her disability, the university provides free academic assistance. As of now, teachers charge about $30 - $50 an hour for tutoring. She will be able to access a resource center for free. I hope this helps. Marie

Sunfish, Thank you for your information! Marie

Ernie, Corina, and Ariella, Thank you for the information! I forgot to mention that being cold all the time really bothers me. I am never comfortable. It really irritates the people around me! 90 degrees today and I am cold. It is good to read that Mestinon may help that. This slow digestive system thing is awful! I am not too keen on the side affects of the Mestinon. I guess I will just have to see. Thanks Again! Marie

I am wondering if Mestinon is worth taking. What symptoms does it help? I have POTS, autonomic neuropathy, raynaud's, asthma, slowed digestive system, lack of sweating, dizzyness, fatigue, tingling in my fingers, and vision shifting. I am on Norvasc which helps the blue/purple hands, but I am still cold. My cardiologist feels that Mestinon will only help my digestive system. My neurologist feels it will help all of my symptoms. The dizzyness and slow digestive system bother me the most. I have a slow message to my atria, so I am on a 30 day heart monitor before going on Mestinon. It seems like many of you have had side effects. I do not want to get my hopes up and have it be worthless or worse become more ill. Thanks, Marie

Dizzygirl - I have autonomic neuropathy, which can be causing your symptoms. They think I may have gotten a viral or bacterial infection that triggered my immune system to attack my autonomic nervous system. They are still looking for other causes. It can cause all of your symptoms. They are still trying to figure out if they can find the cause of the neuropathy, so they can treat the cause, which will in turn - hopefully-stop it or improve it. I am going to a cardiologist who is testing me for amyloidosis and endocrine problems. He said a tumor on the pituitary gland or adrenal glands can cause problems with the heart and blood vessels because it affects the amount of hormones produced by the pituitary gland and adrenal glands that can affect the heart. It sounds like you need them to revisit your pituitary gland. It took 6 years and four neurologists and many other doctors and tests to get my diagnosis - and they still aren't sure. I am sorry that you have to go through this. Best of luck to you- Marie

Dayna, I live in Waukesha County. Marie

1. Marie 2. Age: 42, symptoms for at least 6 years 3. Dx: Autonomic Neuropathy, Raynaud's, POTS, Asthma, slow message to atria - presently being tested for cause 4. Age at dx.: 40 5. Where you live: Near Milwaukee, WI 6. Symptoms at worst: lightheaded, loss of balance, vision tilts 90% suddenly, feeling of extreme cold in whole body-hands almost always, lack of sweating, so I can overheat easily, but I mosty feel cold, Stomach pain when I eat from GI motility slowing, chest pain 7. Symptoms at best: cold, lightheaded 8. Medications/treatments, etc. that didn't work for you 9. Medications/treatments, etc., that do work for you: Singulair and Zyrtec help just a little for asthma, Norvasc helps blood flow to my extremeties due to Raynaud's, so I now have strength back in my arms. I may begin to take Mestinon for better nerve function if the cardiologist feels it is safe with my atria. The Dr. did not give me a name or cause yet for the slow message to my atria.

Dayna, I have a friend who takes Zoloft. She said it took a couple of months before she started feeling better. She also had increased anxiety in the beginning. I hope you feel better soon. I noticed you live in Milwaukee. I also live in the Milwaukee area. Marie

Dayna - I did not send any of my kids to preschool. My husband worked 2nd shift, so thay always had one of us home. We did not go out of our way to do "teaching" activities at home. Just normal playing, talking, and going places. I am a teacher and not a fan of preschool unless the child is delayed. Kids learn developmentally anyway. Why do we make kids grow up so fast? If you send your child to preschool, maybe you could arrange with them that he go a few days a week or parts of the days that are better for you or like others have suggested -there may be a parent that would transport your son. Marie

Dennis - I have raynaud's in my entire body. My hands turn blue, purple, then white from the blood vessel spasms. White hurts the worst because that means there is no blood flow in that area. At times, my hands turn red and burn. This is due to a sudden surge of blood flow. I am taking norvasc, which helps the blood vessels to spasm less. I still feel cold, but at least I know I have blood flow in my hands. The frequent lack of blood flow will damage the vessels. My neurologist also said that I remain cold due to the autonomic neuropathy. She said there is no medication for that other than trying mestinon, which may help all of the symptoms I have because it is supposed to help nerve function. The doctors have said that using heating pads, blankets, and gel packs often is ok as long as you don't make them too hot to burn yourself. I buy the heating pads and blankets that automatically shut off in case I fall asleep. I do not sweat, so I can overheat easily. Good luck on your quest for temperature control! Marie