Thank you for your reply Retta - small mistake in my previous post - I was 49 when diagnosed and I am now 62
A long difficult journey. Eventually, after years of tests and getting worse, I was referred to a movement clinic in Westmead, Sydney (I live in Sydney Australia).
I was examined by a group of Neurologists who were a bit confused and thought I had some severe auto-immune disorder (such as Bechets or Lupus) that required some really aggressive chemotherapy treatment to dampen down the immune system - BUT there was just one doctor - a young doctor just beginning his Neurology career, who did not agree.
He told the group he thought I had DRD, a disorder I had never heard of before. He told me afterwards that it was the fact I got worse during the day that made him think of it. I was hospitalised (again!) and had another spinal tap and a phenylalanine uptake test - bot,h though not diagnostic, were "suggestive" of DRD. I was prescribed Madopar. After just one tablet I could feel the change!!! I had a marked tremor in my left hand which I had for years - it just magically stopped. I could walk and talk again!! How miraculous! Every day now when I leave my house to catch the bus to work, I give thanks for my remarkable good fortune.
But I do still have some symptoms which might very well be Lupus - but I am suspicious that it may be low Serotonin. I was interested to know that Alexis had panic attacks as so did I - very severe - almost paralysing - but after L-dopa I have not had one since. I am still anxious at times though. It is the daily headaches and gastro-intestinal problems that I now struggle with.
I went back to see the Neorologist last Sept (first time since diagnosis in 2000) to ask about genetic testing - but he seemed to think it was not necessary- so I did not do it. But now, since reading about your twins, I want to see which gene is the cause of my DRD so that I can understand better whether there is also Serotonin involvement as was the case with Alexis.
I know that if I take Imigran (Sumatriptan) for my headaches, they go away for a while - I believe that Imigran is a type of medicine called a serotonin (or 5HT) agonist. But I am not sure what that means...Is 5HT a prescribed drug? Imigran is a drug usually prescribed for migraine - however these headaches are not typically migraine. Is there a way of testing to see if you have low Serotonin?
I am so pleased for you that your twins are now doing so well...