Driving me Crazy

[Yankiwi]

If you can afford it, buy a digital book to read, since you prefer them, and a paper book to take with you when you see a doctor. I bought two paper copies: one to keep and one for my GP.

[agpthng]

I haven't found it available in digital format unfortunately.

[agpthng]

Yeah the book has arrived and I've already gone through 1/4 of it quite fast. Boning up for my neurologist appointment on Friday!

[agpthng]

Ok Friday, March 20th was my visit to the neurologist again. I went prepared, I had bought the Clinical Management book, read and highlighted items. I had gone earlier that morning to see my general practioner for congestion and mentioned to him that I was headed to the neurologist that afternoon. I asked about my symptons and said I should have her also ask for a magnesium level test. Needless to say my neurologist wasn't receptive to me having knowledge or asking about magnesium! She said she's never checked anyone's magnesium levels. She is also a sleep study physician and each time I've gone the whole talk has been about sleep apnea and that I need a Cpac (sp) machine. She pretty much dismissed my questions. I asked about augmentation and that I think I'm experiencing it and she said I couldn't possibly with the dosage I'm taking of Mirpex. I did make an appointment to do the sleep study in April to put that to rest! She pretty much told me, I needed to stop my one coffee a day, my wine at dinner, and use a CPAC machine. I feel doomed that I will be dealing with this for the rest of my life without any help from the medical field!

[Rustsmith]

agpthng, you need to give some serious thought to whether you want to continue with your neurologist. You do not need to tolerate that sort of treatment and attitude. In fact, you might give some serious thought to using your GP and educating him. Sounds like he might be very receptive to working with you.

Like you, my initial diagnosis of WED was provided by a neurologist/sleep doctor. After the sleep study, I was subtly pressured to buy my CPAP machine from them right then. Fortunately, my wife was already on CPAP, I knew about mail order CPAP machines and I knew that the doctor MUST right and give to you a prescription if they are recommending use of a machine. When I said I wanted to think about it and compare prices, the doctor's PA admitted she did get nothing for selling the machines and that I could get a better price on the Internet. I was also suspicious of the score for the test because it was EXACTLY the minimum value that my insurance company requires for coverage. About a year later I was finally able to get a full report on the test (as opposed to the patient summary sheet). Turned out that they had rounded my score up and that my situation did not warrant CPAP. Sleep tests are a lucrative source of income for many doctors and they can supplement it by selling the equipment and supplied as well. That is why so many doctors are getting into that business.

In addition to the sleep neuro (who I will never return to), I was also seeing a different neuro for migraines. Her reaction to a question about the use of gabapentin for WED was as dismissive the one you got from your doctor. When I challenged her on it, she stomped out of the room saying "Well, obviously you know more about it than I do". I now see a much better doctor for my WED and only use the CPAP because my wife says it stops my snoring .

[Polar Bear]

agpthng..... I feel so cross on your behalf !!

Rustsmith has mentioned educating your GP. I work only with my GP.
My one and only appointment with a neuro (which I paid for myself) was a total waste of time and cash.
During the neuro appt I just knew that he was no WED expert, he checked nerve endings and reactions etc. all ok so he agreed that it was likely to be WED/RLS.
And his parting advice was to continue with what I was doing.
The only good thing that came out of it was that the neuro confirmed to the GP that it was ok to supplement my WED meds with codeine for relief.

Your neuro does not appear to be inspiring.
If GP is willing and is already treating you for your WED symptoms, and if he is willing to learn..... I'd go for it and see if he will work with you.

[agpthng]

Thank you so much for encouragement. I shouldn't be this way, we all don't have the answers neither do our doctor's. But I am going to do the sleep study test in April to quiet her mainly. I don't believe no matter what the results say, I will be getting a CPAP machine, I don't do well with things over my face. Trudge on I go. But weirdly, I've been taking 1/2 of my dose (which is .25 mg) each day at 5:30 and I haven't had symptoms showing up, plus while watching T.V. I've been knitting, which I haven't had time previously to do, combination of the 2 might be helping me? Active mind and hands? I really don't want to take anything at all but I'm thinking that's not a option anymore. According to the neuro, I'll just have learn to live with it, not curable (that I know).

Carol

[Polar Bear]

I'm not impressed by a neuro saying 'You'll just have to live with it'. !!

[agpthng]

I will do the sleep study and then hopefully I'll be done with it and get my gp to keep my prescription going since I can't seem to get off of it.