| After having been diagnosed with P.O.T. 14 years ago, I have only met one other lady with this problem. I am thrilled to hear from you. In 1990 Professor Marsden in London diagnosed P.O.T. for me at the "Institute Of Neurology ". Up until then doctors in N.Z. said it was all in my imagination. So when I realised it had a name I felt I wasn't going mad after all. I have had OT for 20 years and have been looking for someone else with this problem. I have only met one other lady with this problem. I have tried to not let it interfere with my life, but I am sorry to say it is beginning to make life very difficult. I am 71 years old but still try to maintain an active life. I have married again after my first dear husband died suddenly. I would love to hear from anyone to compare notes. UPDATE: October 25, 2004 Have travelled all over the world spending 4 holidays in London, through the Panama Canal, over the Canadian Rockies - Vancouver to Toronto, toured all round U.S.A. My husband and I took a trip and went across U.S.A on to U.K.then Scotland over to Norway home via Vancouver. I have tried not to let P.O.T. stop me doing anything. But now I am sorry to say it is becoming worse. I am on Primidone 4 & 1/2 daily . After reading some of your letters, I would like to tell you of something which I thought were not relevant but now I wonder? 1938 no anti-biotics then. When I was 5 years I had had a lot of chest problems bronchitis, whooping cough. I was sent to a specialist who was some distance from where we lived who after examinations said that I had T.B. I had to stay in hospital for 1 month then when they allowed me home I had to have complete bed rest for 2 years. Not even allowed to walk to the toilet. After 2 years I was allowed up but could not walk at all, so I had to learn to walk again-- 1 hour a day for a week and then the next week 2 hours a day and then on till I regained some mobility. We then moved to our Capital City Wellington and my mother took me to see the Chest Specialist there who after taking many tests said I had never had T.B. in my life. I started school at 7 years with 5year old children and felt very much out of my size !! I just wonder if this 2 years bed rest had any thing to do with P.O.T. ? After that I went right through school and never had another thing wrong with me till now. I married and had 3 little girls who are all and now have 7 grand children and 1 great grandchild. I do not drink any drinks with caffeine e.g. tea or coffee I do find I cannot walk far 100 meters and I become very tired. After lunch every day I have, to have rest or I cannot last the day out. I am thinking about buying a small shopping scooter as I have been unable to do Christmas Shopping for 10 years Keep up the good work on this web site Please let every one know about my experiences. Thank you, Iris IRISM@xtra.co.nz Tauranga, New Zealand I would love to hear from anyone to compare notes. |