Restless Legs Syndrome (RLS) Discussion Board

It's 8:30pm, and we just got home from a very long day up to Nashville (from Birmingham, AL) to have a Zoom meeting with Dr. Arthur Walters from Vanderbilt. (I had to be in the State of TN for the meeting. We thought it would be fun to go all the way up to Nashville, but it was too long a day.)

Don't have time to write all I'd like to say, but I'm really aggravated that Dr. Walters wants me to get a sleep study done AND put me on medication, when all I wanted was a doctor to count on when it's time for another iron infusion. This is exactly what happened last September when I saw Dr. Rye at Emory in Atlanta. I had hoped Dr. Walters might take a different approach.

I'm relatively new to RLS but what the heck is going on? If iron infusions worked for me and made my RLS symptoms go away, why do they want me to go on pills??? And why the freaking sleep study? My last ENT suspected I had mild sleep apnea and recommended a night guard from my dentist, which I have--but now it's more likely that it's LPR causing sinus/throat problems at night. Treatment has just begun for that.

I just can't understand why doctors who do the webinars for RLS.org talk about RLS as being a problem of not enough iron getting to the brain--but yet the two experts I have met don't seem to believe that at all, that iron is only a small part of it. They seem to want to skip over infusions and go straight to drugs.

I don't understand why I should even have to make a case for sticking with iron until such time as it ceases to work for me.

That took too long to write. Have to stop and try to relax. Thanks for letting me rant.

No idea. I know that Dr. Buchfuhrer rarely has people do them. But, maybe there are issues with comorbidities that make it more likely to want? Hmmm.

Followup: Just sent a rather long message to Dr. Walters telling him in effect that the only treatment I am going to accept for the time being is iron. No medications. No sleep studies. No frequent trips up to Nashville. (My husband and I got quite confused when he started talking about our having to make 4 trips up there in the near future. We had no idea where that came from.)

Having as many medical conditions as I do, what gets me down the most is feeling that I'm not in control--that I have to everything doctors tell me to do. But in this case I've made a stand and feel better for it.

EDIT: ViewsAskew, I see you replied just as I was writing this follow-up. I told my husband last night that I could accept Dr. Rye suggesting a sleep study last year because he examined my throat, etc. and could see/hear that I am normally a bit stuffed up. But Dr. Walters couldn't really see me at all because of bad lighting during the Zoom meeting--and he couldn't seem to hear me very well either. The sleep study was brought up only as though it's something they always do for RLS patients.

Honestly, I am not at all sure that he understand I was not having any current symptoms. And I also didn't feel confident that he understood that I had just started treatment for laryngopharyngeal reflux (LPR). The specialist ENT I went to is excellent and I am positive he would have brought up the possibility of sleep apnea if he had seen signs of it. (Where I have inflammation is more consistent with LPR.)

Pleased to have gotten a quick response from the doctor--and that he wasn't offended by my refusal to comply with his suggestions. He simply agreed that we could wait until October to do a live visit in his office and test my ferritin levels then. Saw no reason to do anything now since I had no symptoms.

Perhaps he went into the meeting yesterday assuming I was in distress and didn't pick up on the fact that everything was currently fine.

Big sigh of relief!

SleepyBhamster wrote: ↑

Fri Jul 02, 2021 10:06 pm

Pleased to have gotten a quick response from the doctor--and that he wasn't offended by my refusal to comply with his suggestions. He simply agreed that we could wait until October to do a live visit in his office and test my ferritin levels then. Saw no reason to do anything now since I had no symptoms.

Perhaps he went into the meeting yesterday assuming I was in distress and didn't pick up on the fact that everything was currently fine.

Big sigh of relief!

Excellent!

ViewsAskew - did I read your post correctly that Dr. B rarely does iron infusions? I have an appointment with him in November that I'm driving down to CA from Seattle for. I was hoping he'd approve me for them since I can't find anyone open to it here in Seattle - they all say my ferritin levels are too high. Based on your comment, I'm wondering if I should skip the trip to CA and head straight to John Hopkins. My neurologist is at the UW Sleep Clinic and now has me on methadone and gabapentin. I thought it was working but now am dealing with severe dizziness (to where I spend all day in bed) and sweating. He won't do the iron iv but he has encouraged me to go to either John Hopkins or Stanford. But it sounds like it may not be worth my time to travel down there, based on what you've experienced?

Dr. B. wrote an email for me that helped me get iron infusions from my rheumatologist. Maybe he doesn't do them himself, but I'm sure he helps people get them.

SleepyBhamster, that's good to know - thank you!

Perhaps I should have clarified that my rheumatologist was open to the letter and other information Dr. B gave me to give him. He sat down and took the time to read everything and is actually now (a year later) quite pleased about his newfound knowledge about RLS. He has thanked me for the education, telling me that I've helped a lot of his patients.

So it all depends on how open your own doctor will be.

jacwillheal wrote: ↑

Mon Aug 09, 2021 1:47 am

ViewsAskew - did I read your post correctly that Dr. B rarely does iron infusions? I have an appointment with him in November that I'm driving down to CA from Seattle for. I was hoping he'd approve me for them since I can't find anyone open to it here in Seattle - they all say my ferritin levels are too high. Based on your comment, I'm wondering if I should skip the trip to CA and head straight to John Hopkins. My neurologist is at the UW Sleep Clinic and now has me on methadone and gabapentin. I thought it was working but now am dealing with severe dizziness (to where I spend all day in bed) and sweating. He won't do the iron iv but he has encouraged me to go to either John Hopkins or Stanford. But it sounds like it may not be worth my time to travel down there, based on what you've experienced?

Sorry - no, I meant he rarely does sleep studies. He often does infusions.