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Approaching a Doctor

Posted: Tue Jan 10, 2017 3:37 am
by SonriaCat
Hi, I'm another newbie -- at least to this board. I suspect I'm nowhere near a newbie to RLS/WED. As far back as eight or ten years old, we used to have a running joke in the family about my wiggly legs when I was in bed. Now that I'm in my early forties it's not so funny anymore, especially when I'm staring at the clock at 2:30 a.m. knowing that the alarm is going off at 5:30...

The last time I said anything to a doctor about having difficulty sleeping he took one look at me and said, "well, it's probably sleep apnea from all that weight. Just lose some of it and things will take care of themselves." He wasn't interested in hearing about the fact that the sleep problems well pre-dated the weight problems (I was UNDERweight until about age 22); and it was a long time later that I found out that no practitioner should be diagnosing sleep apnea without at least doing an assessment if not a full sleep study.

Unfortunately, this isn't the first time a doctor has seen my weight before my symptoms. I've had an emergency room doctor yell at me about letting myself get addicted to carbs when I was in there with a headache so severe I couldn't see straight. I had an orthopedist tell me that I probably wouldn't have broken my ankle a couple of years ago if it hadn't been for all the weight that was suddenly thrown against it when I slipped on ice. I've had doctors tell me my bipolar disorder (a condition which is ALL OVER my family and is thus likely genetic) would "go away" if I could just "learn to eat right." (None of them ever asked me how I ate.) I've even had a doctor look at me and tell me that it was obvious I was looking for an excuse NOT to exercise when I went in there asking what I could do to get my legs to quit hurting every time I did!

You can see why I'm very hesitant to approach a physician about getting formally worked up for RLS/WED. The irony here is that I work in health insurance so I'm always helping people navigate the system. At least, the financial part of it, anyway.

The GOOD news is that I live in the Atlanta Metro and there aren't one, but two sleep centers on the RLS site that are within easy reach of me and in my insurance network. I'm actually leaning toward Dr. Pitts at FusionSleep because he is also an ENT and I also am fighting anosmia and chronically leaking/bleeding sinuses. But as you can probably tell, I'm terrified. It doesn't matter that reading the RLS/WED symptoms is like reading a checklist of everything that's wrong with me; I'm still sure he'll write it off as hypochondria or weight related.

Any suggestions for approaching a physician when it's a self-referral?

Re: Approaching a Doctor

Posted: Tue Jan 10, 2017 5:37 am
by ViewsAskew
Do all you can to see Dr Rye at Emory. He researches RLS and has RLS. He really gets it. If I remember correctly, Emory is certified by the RLS Foundation, too.

It is so sad that these doctors have such biases. I feel for you having to deal with that.

Re: Approaching a Doctor

Posted: Tue Jan 10, 2017 11:05 am
by stjohnh
SonriaCat, seeing one of the RLS specialists is optimal, but may take some time. In the meantime, to get some sleep, I would go to my regular doc and say "I think i have RLS and it's keeping me awake." If the doc says the solution is to lose weight, then it's time to ditch that doc and get a better educated one. The doc should discuss your symptoms, and say something like "I think this medicine would help" and prescribe a dopamine agonist (likely Requip or Mirapex) or gabapentin/Neurontin/Horizant. Also ask the doc to do a ferritin test, since if your ferritin is below 75, then iron tablets may help your symptoms. Don't let the doc prescribe sleeping pills, they almost never help for RLS induced insomnia.

Re: Approaching a Doctor

Posted: Tue Jan 10, 2017 9:24 pm
by yawny
My suggestions...learn as much as you can about this condition so you're better equipped and more confident interacting with any physician. I joined this group about a year ago after I finally realized I had RLS. I read the forum posts (even ones that didn't apply to me) whenever I had any free time and got the recommended book (Clinical Management of Restless Legs Syndrome, 2nd edition). I've learned so much from my fellow RLS sufferers...they have a special place in my heart. And I went through 8 doctors trying to figure this RLS thing out. The first sleep specialist (who considered himself an RLS expert) told me within the first few minutes that "people with this condition sometimes kill themselves." I could hardly breathe. He then prescribed me Mirapex after I told him I wasn't ready to take it since learning my ferritin level was too low still. He ignored me, handed me the prescription and walked out. I then got my courage up and contacted him for an alternative to the Mirapex and he said "it's what I'd prescribe to my own wife." Again, not listening. I thought, do you not listen to your wife too? I tried again and he stopped responding to me. I was so depressed but confident in my decision because of what this forum has taught me! I persevered and kept trying new doctors and finally I found several doctors that are respectful and listen to what I think! My suggestions in general...learn as much as you can, lean on this group for support, try different things, don't give up!

Re: Approaching a Doctor

Posted: Tue Jan 10, 2017 10:41 pm
by legsbestill
Yawny speaks much wisdom. I too learned more from this website than from any medical professional - as well as gaining huge emotional support. I do not know where I would be without it and the generous souls who post here. It REALLY helped me in my interactions with my medical professionals. It is also worth looking at the replies of Dr Buchfuhrer on the SoCal rls site.

Re: Approaching a Doctor

Posted: Wed Jan 11, 2017 1:40 am
by SonriaCat
Awesome, thank you all so much!

Re: Approaching a Doctor

Posted: Wed Jan 11, 2017 3:39 am
by Rustsmith
One year ago my wife and I made an interstate move that forced me to leave my doctor at one of the Foundation's Quality Care Clinics. Upon arrival in our new home town I quickly found out that no doctor in town would prescribe any form of opiate due to local drug abuse issues. I was had been severely augmented on pramipexole and could not change due to the pending move. So I contacted the Foundation office for help and found out that the state medical school was in the process of applying for Quality Care status. When I did my research on the school, I found that the school required a referral from a local doctor and would not allow patients to make appointments directly. So I went to my local GP and explained why a local neurologist could not treat me and why I needed the referral to the medical school. He was happy to help out and sent the referral the next day.

From the time he sent the referral, it took me four months to get in to see my new neurologist but it was well worth the wait. When I went in to that first appointment I immediately explained why I was there using the proper terminology like augmentation, dopamine agonist, severe RLS induced insomnia, etc. I mentioned the name of my former doctor and explained that I was a volunteer with the Foundation and an active member of this board. The tone of her discussion changed immediately from one of the normal doctor who needs to dumb things down for the patient to one of a discussion between equals. I am even pretty sure that she was testing me on a couple of occasions, like when she proposed using Tramadol. I replied that I didn't think that it was strong enough for my situation and besides, it can also cause augmentation and I didn't want to get back into that jam. She nodded her agreement and smiled. On several occasions I emphasized that I was there for her help and that I wanted her to tell me what I needed to do to get things back under control but I also wasn't afraid to offer my suggestions.

So, if you speak knowledgeably, don't try to challenge the doctor's authority and position but also don't allow the doctor to speak down to you, then you can develop a good working relationship with a doctor. Of course, there are also lots of doctors who still have the god complex type of attitude, for them I have simply told them good bye, I won't be back because you are not willing to work with me.

Re: Approaching a Doctor

Posted: Wed Jan 11, 2017 3:06 pm
by Polar Bear
SonriaCat - so much great advice in the responses to post. Learn, learn.
The book mentioned by yawny "Clinical Management of Restless Legs Syndrome, 2nd edition" is particularly excellent, easy to read and perfect for discussion with a GP.

Re: Approaching a Doctor

Posted: Wed Jan 11, 2017 11:54 pm
by Mister_Ed
I agree with Steve. I printed off studies from Sweden for my Pain Doc. Don't go to a family Doc but go to an Pain clinic, let the pain Doc know your issues and hit the with the midication pump. I can provide anyone with the Docs name, the surgical team and the person who will maintain the pump for the Doc.


Re: Approaching a Doctor

Posted: Mon Jan 30, 2017 4:01 am
by badnights
SonriaCat. I feel sick to think of what doctors who swear to care have done to you. Steve's advice to be assertive is going to be essential for you, but you'll have to overcome years of feeling substandard, and you'll have to actually practice speaking up for yourself.

If a doctor gives his/her ludicrous instant response, you have to remember that you know your own body. You have to reach out past the feelings of inferiority that he creates in you, remember you actually have a legitimate concern, that you're in the right; and bring that doctor back on track however you can. Make him/her see past your weight, in a respectful but firm manner. Repeat what you began with.

It helps if you write it out before you go - your main concerns and your goal for the session - and communicate these clearly to the doctor at the beginning. Remember, you don't have a lot of time, so only address the essentials.

For example: my main concern is extreme chronic sleep loss, and it's caused by yucky wriggling electrical sensations in my legs as soon as I lie down, plus an urge to move that can't be ignored. (modify to suit your case) My goal for this session is to get a diagnosis, and treatment options, or at least the next step toward diagnosis and treatment.

Repeat these if the session is veering off track. And don't leave without your goals being accomplished.

Unless the doctor is a real dick, in which case you could stand up and say as you're leaving "can you recommend a doctor who isn't a dick?" No, just kidding. Better not do that.

Re: Approaching a Doctor

Posted: Mon Jan 30, 2017 5:35 am
by ViewsAskew
I might have missed you have someone who can go with you? I have found that when my husband is there, many doctors (not my main one, but others) seem to take everything more seriously. That he bothered to come helps. That he is male may help. That he is articulate and will keep asking until he gets a specific answer helps a lot. We do this for his mother - one of us always goes with her - he does it for me when I feel I need it (either I am too sleep deprived to be effective or the doctor is minimizing), and I do it for a friend of mine who has lupus, which has affected her cognitive reasoning.

With his mom or my friend, I usually try to identify the top issues for the appointment and make sure I know what outcome my MIL or friend is looking for. I listen most of the time and only if I feel these issues have not been addressed do I start speaking or asking questions. If you have anyone who might help in this capacity, it might change the dynamic - and it would certainly make you feel that someone had your back, so to speak.

Re: Approaching a Doctor

Posted: Mon Jan 30, 2017 7:57 am
by badnights
Actually, a friend of mine just told me he does this, too. Routinely, he will bring his wife to appointments and vice versa, since the person whose appointment it is can get caught up in the detail or emotion of what the doctor says, while the partner will remember things that the other person missed.

Re: Approaching a Doctor

Posted: Mon Jan 30, 2017 8:08 am
by Yankiwi
My husband and I each attended each other's medical appointments for the past few years. An extra brain was most helpful.

Re: Approaching a Doctor

Posted: Mon Jan 30, 2017 6:15 pm
by legsbestill
It required a bit of courage the first time - it felt almost like reverting to childhood - but an additional voice in the consulting room can be invaluable.

Re: Approaching a Doctor

Posted: Tue Jan 31, 2017 4:25 pm
by jul2873
Hi SonriaCat,

Oh, I got so angry reading your post. How can doctors treat a patient like you've been treated? Here's what I know: It is very important, for all kinds of reasons, to change doctors when one treats you like you've been treated. Not just because of the RLS--although that is a critical reason--but also because it tears at your self-esteem and makes it much less likely that you'll seek out a doctor when you need treatment for anything. For many conditions, especially cancer, early treatment is everything. Take care. Find a doctor who will listen to you. Get well!