Reply to Keitha.
My husband has seen 2 neurologists who really were no help.
They ended up telling him it could be worse.they intimated that he was lucky not to have something more serious.
Doctors losing patience also.
No one understands this condition as far as I can see.
My sympathies to you all.
Goodfairy
That’s disgraceful. There is a useful medical textbook which can be ordered from Amazon: ‘Clinical Management of Restless Legs Syndrome’ by Drs Lee, Hening, Buchfuhrer, and Allen.
It might be worth ordering to show to your less than worthless doctors.
Complain! Drs wont stop treating us so badly until we make them.
If you went to a mechanic with a strange knocking in your car would you accept him doing nothing saying well it could be worse? Or if you ordered a Margaritta pizza only to be given a Peperoni one and told at least its not chicken!When people wont accept this shoddy treatment for minor things why accept it for something as important as our health?
When they have no answers/available effective treatment for their patients they become mean, sarcastic, say it's in our heads and so on... I had that once with a private gynecology specialist I went to see. I went to her one time too many. I wasn't happy with the treatment she offered me as it wasn't working and she snapped at me and talked to me like dirt. And I kept quite. Some times we are just speechless.
I did that with a neurologist swhom I was sent to by my Primary Care doc (who calls himself a Mechanic). The Neurologist was rude, arrogant, sarcastic. He wanted to know why I was there. I replied, because my PC won't give me a script for Warfarin, nor allow me to go back to the Coumadin Clinic for monitoring until I see YOU. He said I did NOT need Warfarin because I do not have Atrial Fibrillation. I replied, "I Know That." I told him I had a stroke was put on the medication by my Internist (who since retired). Internist told me that due to the type of stroke I suffered, I would have to remain on Warfarin for rest of my life. So, when I questioned the neurologist, he became agitated and yelled at me, pointing his finger in my face. I told him I don't have AFiB. He said AFIB is the ONLY reason I would take Warfarin. I disagreed, and reexplained my history. He insisted I have an MRI. Came back to see me afterwards and stated, "yes, you had a stroke." (Yeah, I knew that). Again asked if he would write a script for the warfarin and Coumadin Clinic. He said "NO!" "Why not?" I asked. He again replied, "BECAUSE you do NOT have Atrial Fibrillation!!!" Then theJERK walked out of the room. Never came back. After a nurse came in to the room I asked if he was coming back. She said No, so I went looking for him in among the examining rooms. Found him in the hallway. Asked him if he was coming back. He said NO! I can't help you. Go back to your PC. You're on your own! You don't have AFIB. The next week I back to PC and told him it is up to him to write my script to continue taking Warfarin for a previous stroke. I brought research to prove to him that giving Warfarin is not only dispensed for AFIB. In fact, the medicine for AFIB is determined by what causes AFIB. I showed him research explaining that STROKE victims are given Warfarin, long term to PREVENT my type of stroke from reoccurring. He got mad, but agreed to write the script.
I have been doing very WELL since my stroke in 1998 by taking Warfarin. Go to a Coumadin Clinic where the wonderful nurses there monitor my levels and help me determine what I should eat or do if the levels change. And, all I needed was the Rx to go to the clinic and get the medication. What I went through was costly and ridiculous. Fight for yourself. No one is going to do it for you.
The second he pointed his finger you should have reached for it and broke it. I assume that is NHS? I can't imagine a Yank taking that sh1t!
Thankfully you were an able advocate for yourself, fair play to you as they say round these parts.
Sounds like the USA health care they are talking about.
Oh yeah so it does! I would have thought with a private system you would have more come back against your Dr as you just take your business elsewhere if you get a poor service,.
Thanks very much. I am still miffed by that neurologist. Can't understand why he is still practicing. But, let's face it. Most people who go to a specialist are there because they are scared and don't know what else to do. PC's are worthless, in my opinion...good for dispensing pills for colds (Although, most don't even do that these days). I have had many illnesses most of my life. I've learned not to be intimidated by such people as the neurologist. Doctors are just people, like you and me. I'm not a physician, but I do have a several degrees. I know how to research, form educated opinions, and speak in defense of my self. No one should presume to feign superiority just to gain the upper hand. Especially, doctors who haven't the slightest idea what a patient might be going through.
Complain to his governing body - sometimes these people only respond to that sort of approach.
I'm so sorry you're frustrated. I just got through an incredibly frustrating time trying to tell my doctors that I'm augmenting. I was met by a frustrated stare when I mentioned it to my psychiatrist, was not given a helpful reply when I called and told my neurologist of my worsened symptoms, and have gotten very VERY tired of hearing about this psychosomatic approach that seem to be a common theme amongst everybody on my team except me! Sometimes I do better at expressing myself in writing, so what I did was compose a letter talking about my over-frustration with this lean towards the psychological, state how unfair I thought it was, state that my symptoms are getting worse regardless, state how scared I am, and state what needs to happen. I showed this to my psychiatrist when I saw him yesterday (and will show it to the necessary members of my team as I see them). This approach worked -- I got through! You might want to try this.
I had the displeasure of seeing a neurologist that was even worse. I told him that I was having cramps in my feet and lower legs, and he asked if I had "got it on video" . Completely dismissive and no desire to try and find something to help.
RLS is not something you can just "live with". I ended up asking my GP if he would be willing to try to find a solution for me himself, and he was happy to do so. I am now on a low dose of Percocet that I take about 30 minutes before bed. Works really well to turn off the sensations completely. I think Gabapentin helps as well.
Don't give up.
Going Mad trying to find a cause for bad nights and days!
Going off of ropinerole
Going nuts with RLS
My frustration with Mirapex and why I am about to try Gabapenti
Im going NUTS!
