Types of doctors

[hope]

Hi I am not new to RLS but happy to have found this forum. For some reason my RLS has gone into overdrive. I have been lucky that my internist has prescribed Klonopin for years, but now says he won't prescribe it. He was always after me to get off of it. So I almost did but then I spent close to a week with no sleep because my RLS was so bad.

I have a chronic compromised immune system which means my healthy immune cells are being destroyed in my body. Once a month I get an infusion of healthy immune cells to get me through the month hoping not to get colds, flu or bronchitis etc. Along with this, I have chronic fatigue, fibromyalgia, insomnia (even without RLS), take blood thinners due to having a pulmonary embolism and headaches. I see a hematologist for this.

Is a neurologist the correct type of doctor to see? I found one and she is great, but right now, I am combining the Klonopin with Vicodin or whatever they call it now a days and try to stay at a minimum dose, but now with the new laws, can't get a prescription called in or don't want to appear like I am doctor shopping to abuse the stuff, but that does give me some relief. Except tonight. No sleepy tonight.

I can't work because I never know if I am going to sleep all night or all day. I can't find any link to the RLS and the compromised immune system. Any thoughts? Also any answers to the type of dr to go to?

[ViewsAskew]

Tough call. If you don't mind me asking, what general areas of the world do you live in? For example, if you are in the US or Canada, what would be the largest big city next to you? I'm asking because we might know of a doctor in your area you could see.

The reason it's hard to say is that there isn't a best type of doctor - rather it's all about whether they are educated in WED/RLS or not. And, how many patients they see. Many do not know that opioids such as Vicodin can even be used. I have seen a sleep doc, a pulmonologist (current), neurologist (several, actually), and a GP. I've had major failures among these and major successes, with far fewer successes!

Have you ever seen a rheumatologist? They often deal with auto-immune conditions. Not sure if they'd understand the WED/RLS, but since they often deal with multiple diseases together, they might.

I hear you on the work front - I've had to take the year off. My goal was to see if I could get back to a normal schedule and "fix" the severe WED and sleep issues. I haven't succeeded, but am still trying!

[Rustsmith]

Hope, I agree with everything that Views has told you. For as complicated as your situation is, you need to be talking with an expert and not a garden variety specialist. In my case, I was diagnosed by a sleep neurologist who seemed to have an idea, but left him due to patient support issues. At that time I was also seeing a "generic" neurologist who was a bit older. She told me that I should keep going up on my dopamine agonist. When I expressed my concern about augmentation and my desire to change to gabapentin, she first told me that gabapentin would not do any good and later said "Well you seem to know more about this than me" as she was walking out of the room (I got my gabapentin and have not been back). I ended up with a research physician who is one of the WED Foundation's medical advisers.

In addition to what Views told you, you should take a look at the WED Foundation website to see if one of their registered Care Centers is within traveling distance for you. If not, we may still be able to point you to someone that is close.