Jean

Hi BUFFROCKCHICK, Thank you for writing to me. I am glad your Neurologist confirmed your POTS diagnosis!!!! It sounds like you have been through a lot!!!!! It just blows me away that so many doctors treat people like this is all about anxiety and in your head!!! Unfortuanetly I had that experience today. I went to a new Neurologist and I was trying to rule out certain Neurological disorders, like MS and Parkinsons. The Neurologist treated me with disregard. He did not seem to think my family history of my mom, aunt, and uncle having Parkinsons was important. He also made the remark that there is nothing you can do for Parkinsons anyway..... I had an MRI four years ago and it was benign. He held to the argument that this was the gold standard test for MS. He gave me a Neurological exam, however did not address any of my complaints regarding my feet are legs tingling. When I mentioned that my Cardiologist thought I my have POTS, he did not argue. However, he concurred that there were no doctors that did the Tilt Table Test for POTS in Portland. He did not see anything in his Neurological exam and basically said there was nothing he could help me with. My guess is he believes this is all anxiety!!!!!! I spoke to a case manager with my insurance company. She is looking into trying to find me someone that work with POTS in Portland........ I am becoming more and more fatigued and more symptomatic. It sounds like you know the feeling. I think that I need to get that fitbit. Do you have a certain brand you used?????? My step kids are coming for the weekend and they just don't understand what is wrong with me. I feel so guilty that I can't do anything with them. I used to always cook them meals and I barely can do that. Standing makes me very symtomatic!!!!!! I look forward to hearing about your progress and your upcoming Tilt Table Test!!!!! Hugs to you as well:))))) Jean

Hi Everyone, I just joined the group. I have been riding the Physician go around for four years. First, was diagnosed with Vestibular Migraines/Secondary Hydrops. My second opinion Neurologist did not believe I had migraines and could neither deny or validate the secondary hydrops diagnosis. I could not handle the medications that were given to me for the hydrops. They caused more fatigue and funny feelings in the head so..... I decided to clean up my eating habits. I gave up caffeine, most processed stuff, low salt for the hydrops, and tried to handle all of this. In the mean time life kept on going and much stress came my way. Also, a couple of years ago I noticed tingling feelings off and on in legs and feet. The heart papations were always there. I questioned if I really had any of the above diagnosis. Also, I knew I was in the throws of menopause as well. I had a partial hysterectomy in fall of 2013 due to Endometriosis and this is when I started to notice the heart palpations, and funny feelings in my ears begun. About a month ago, I was back in Houston dealing with financial things since my mom died, and I just could not handle the heat. My heart raced more than normal!!! My friend bought me a bp checker and long behold, I realized that my bp were lower than I thought. Readings would be 95/65, 100/60, 100/73. Also, my heart raced higher when standing and bp drop and come back up!! This got me wondering if this has been happening all along!!!! Also, I have noticed that I have always been sensitive to cold, but know I can't handle heat. All of these things are autonomic issues. I came back to Portland and tried to get in to see a Cardiologist. He did not consider my bp readings an emergency. Finally, I saw him yesterday. He believes I have an autonmic issue, but said I can't help you. He suggested I get on a forum and try to find a doctor this way. Also he said that there were not POTS physicians in Portland, OR. The insurance issue also has me scared out of my mind because I have to stay within my network or pay out of network prices, which I can't afford. I have not been able to hold down a job for the last years!!!! Thank you for listening and any advice is greatly appreciated!!!!! Jean:)))