Last week i went to see a neurological 'expert' for the first time since diagnosis in 2005. Even then the 'expert' told my doctor i had diagnosed myself as having RLS and he 'tended' to agree with some reservations as to some of my symptoms. To cut a long story short i ended up taking 24mg of Ropinirole a day and its been causing a lot of problems this past year. So i bit the bullet and asked to be referred back to the hospital. I was terrified they would just take me off the tablets and leave me hanging yet again. This time i was very surprised to find the consultant was someone who actually knew what i was talking about. He is prepared to wean me off the Ropinirole and onto another tablet but doing it slowly. To my surprise it wasn't just a case of reflex actions he looked at either. He is doing a battery of blood tests and he is also arranging a full head and body scan. It seems when he did the little bit with the hammer he is worried that my reactions are too sharp and too fast. Not sure what that's all about. When i explained that i had suddenly started dropping off to sleep he knew exactly what it was. Told me its a classic symptom. That in itself was a relief as it was really beginning to worry not just me but my family. In all the years i have had this horrible thing i have had to fight all the way to get somebody to believe it exists. But persistence is now paying off. I don't expect any miracles but at least i might now get some answers. That and some relief is all i can ask for. In searching around the various sites to get info to take with me which absolutely astonished me. When i think back most of it started around the time i went onto the Ropinirole. High BP, Heartburn, constipation, dizziness, concentration, anxiety and now lately the falling asleep suddenly and insomnia. All of these could be related to the meds i am on and until i came to this site nobody gave me any warning about them. In fact my doctor even suggested the sleep problems were psychological in relation to having watched my sister die from cancer last year. Thanks to this site i am going in now armed with more information and with a fighting chance of getting somewhere near a normal life. Just wanted to say thank you to all of you for all the stories and encouragement you give. I have had this since i was around 10yrs old. It is hereditary from my fathers side and has woven its way through the family to include my grandchildren. Now i can refer (and have) them all to this site and who knows in a few weeks might even be able to give them some answers. Till then all i can say is if you have a GP who brushes you off then do what i did eight years ago and insist you be referred to a neurologist as soon as possible. If they wont do it change the GP to someone who will listen. Good luck to you all.
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