Restless Legs Syndrome (RLS) Discussion Board

I will be anxiously awaiting news of how things went. And the weather held out for you today. My fear with winter appointments in Denver is always that there will be a major storm that shuts down the highways through the high passes.

Finally home from my appt. I saw Dr. Kristen King, plus her superior. I was with Dr. King about 45 min. Then she left, talked with the other doctor, then they both came back for 20 min. First, I have to say, they really listened to me.
They are sending me on to your doctor, Steve, Dr. Jean Tsai, plus they want me to see the Neuro Muscular Disorder doctor. They ordered an EMG. Labs were done today. They wanted to know what my magnesium levels were, plus other stuff.
They want me to take Magnesium 400 -800 mg a day plus Co Q 10 100 mg three times a day.
So, tomorrow I will make those appt's.
The weather was perfect, sunny. It takes 3 1/2 hours to get there. I had the senior van take me. It is so much easier.
Nothing else to report. I will keep you all posted.

That is wonderful news, Deb! To hear that doctors really listened? That in an of itself is truly wonderful. Now, let's hope they can get to the bottom of this.

I am not certain that there is something else going on with you - I am not a doctor and have little knowledge of such things. I am relatively sure, however, that some of us with RLS have or get additional disorders/issues and they can seem to be RLS but are not. When that happens, we can easily miss the other issues, because it seems like RLS. If this is the case for you, here is hoping they can tease them apart and find a solution that works well for you.

Deb, that is wonderful news. I have to admit that I was nervous about how well it would go since I have been suggesting that you go to Denver. I would have felt really bad if you didn't get the same sort of caring response from them that I have been getting. I am also happy that they decided to refer you along to Dr Tsai because she may be the best on their staff to address your combined issues of RLS and central apneas.

My one word of warning is to expect that it will take a while to get an appointment. When I was there three weeks ago, the next available appointment with Dr Tsai was late April. You might possibly get in earlier if you can get a "new patient" appointment on her calendar.

Things are looking up, Deb. Even though you have a wait ahead, you've seen doctors who care and who listened, and who are referring you to someone who has expertise in WED/RLS. I suspect better things are on the horizon.

Well, I made the other appts. One is Feb 22, with the Neuro Muscular disorder, Dr. Quan. That dept would not schedule the EMG without seeing Dr. Quan first.
Appt. with Dr. Tsai us not until May 23. I am ok with that.
I started the magnesium and increased Co Q 10. The last two nights, no spasms, but that has happened before during a good period, just rare. Since I got 12 hours, then 10 hours of sleep the last two nights, I felt pretty good today. I did some sewing. Now normally that would trigger some spasms tonight. Sitting straight does it for me. Will see what happens tonight.
Thank you for all of your support.

Who knows - chance or because of what you are taking. Either way, great to have a few days of no symptoms!

Nice!

Only lasted two nights, but have had a couple other nights with just mild spasms. I think, coincidence again. Just a good period, but I decided to keep track for awhile just in case.

Tracking is a good idea.

I have had another 3 good nights, after the one bad one. It is so frustrating that one bite of chocolate does me in. I will continue to track.
So here is what I am doing now.
2.5 mg methadone at 1 pm
5 mg methadone at bedtime, 10 to midnight
2.5 mg methadone 3 to 4 am
Co Q 10 100 mg three times a day
Magnesium 400 mg twice a day
I have had to increase fiber.