Specific doc at Mayo MN + How to Choose and Talk to Your Doctor

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Polar Bear
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Re: Specific doc at Mayo MN

Postby Polar Bear » Thu Sep 22, 2016 9:24 am

When we go to our doctor prepared with relevant information we need to be careful not to inundate doctor with too much. It helps to prioritize and to highlight the specific section/paragraphs, and I have even had the highlighted areas prioritized.

Perhaps several elements need discussed so I'd choose my priority, especially as our appointments here in the UK are time limited.

Recent appointment was about a sore neck/shoulder and once doctor suggested Gabapentin for the nerve pain (from problem C3/4) I quickly kept the discussion on the sleep aspects of Gabapentin because my second (nearly a tie for first) priority was sleep and I didn't let the consultation drift from sleep after that.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Rustsmith
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Re: Specific doc at Mayo MN

Postby Rustsmith » Thu Sep 22, 2016 12:14 pm

My experience has been that if you use the proper medical terminology in your first explanation of your problems and if you quickly and concisely hit all of the issues, most doctors will notice the fact that you have educated yourself about your condition and the tone of their replies will be at a much higher level. I would also suggest researching the sleep doctor's background online prior to the appointment. Sleep doctors can either have a background in neurology or pulmonology. Either may be qualified to treat RLS based upon their sleep training, but a neurologist would also be familiar with the issues associated with your MS.

Therefore, my suggestion would be to start off with "I have only been averaging X hrs of sleep per night based upon these records (don't hand them to the doctor unless asked so that you don't seem too pushy). I need more sleep to handle the fatigue associated with my MS, but my secondary RLS is preventing more sleep. I have augmented on two different dopamine agonists and am concerned about mood issues associated with drugs like gabapentin and pregabalin because of a history of depression and suicide ideation. I also experience pseudobulbar affect as a result of my MS".

The important thing with this intro is to use words like "secondary RLS", augmentation, the names of specific drugs and "pseudobulbar affect".

During all of this, I would hold the stack of paper with your records, etc. in plain sight, but I wouldn't move to hand them to the doctor unless asked verbally or by the doctor extending his/her hand.

I think it is also quite important to warn the doctor about your pseudobulbar affect. As an MS spouse, I have frequently been on the receiving end of that and it is very difficult to respond to, even when you know what is happening. I can only imagine how a doctor who is under time pressures would respond if they don't personally experience this on a day-to-day basis.

So, good luck and I hope the appointment goes well and the results exceed your expectations.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Madmom02
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Re: Specific doc at Mayo MN

Postby Madmom02 » Thu Sep 22, 2016 1:28 pm

The advice about not overwhelming the doctor with info, being concise, and using correct terminology is brilliant. Thank you!

Steve, I'm sorry you're on the receiving end of the PBA. My husband is a fixer and I see his frustration because he can't do anything. Have you or your wife seen the PBAinfo.org "Tips for Living with PBA"? I've found them very useful and, in fact, the one about changing positions helps me with the laughing side. Doesn't help much with the crying thing, yet, but I'm working on it.

:thumbup: :thumbup: :thumbup:

ViewsAskew
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Re: Specific doc at Mayo MN

Postby ViewsAskew » Thu Sep 22, 2016 11:45 pm

Maybe because of delivery, age, or gender, I've had different reactions than Steve when using the correct terminology and approaching it that directly. Not to say that I haven't at times had good experiences, just that they aren't always good.

Most recently, I had a very good experience. I emailed a bunch of doctors first and based on my email exchange, chose one. While I ultimately decided she and I didn't agree on the treatment approach and that I didn't feel she had enough experience with my issues, we had a very professional and appropriate discussion.

One doctor, an older male, told me he didn't want a patient who knew as much as I did - he was the expert, after all, and I had no place in determining his treatment of me. Well, then.

Another doctor, a woman, was overwhelmed by my knowledge, which was much greater than hers. She didn't get defensive, rather stuck to her basic script and ignored everything I said as she spent an hour determining that, yes, I did have RLS and that she, indeed, was unable to treat a case such as mine. Really? Duh.

Two doctors have "fired" me as their patient. One refused to work with Dr. B and accept anything he'd done and wanted me to repeat nerve tests, sleep studies, etc. because there was no way I could have symptoms 24/7 - I must have something such as piriformis syndrome. She even brought in a nurse to confront me over opioid use, accusing me of refusing to work with her to find the real problem.

Sigh.

Not trying to say that this will happen to you. Just that if you do not have a lot of choice and the method you choose to get the doc to help you isn't working, you may have to alter it! For me, each time I just decided I'd rather have NO doctor than an incompetent one and made the decision to fly to CA from Chicago to work with Dr. B. Many people couldn't do that. It actually was less expensive than what I was doing in most cases, since he works with me through email and I usually only need one visit a year and can stay with friends or family for no cost.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: Specific doc at Mayo MN

Postby Rustsmith » Fri Sep 23, 2016 1:04 am

I see Ann's points, especially when it comes to somewhat older doctors. Before I was diagnosed, I was being treated for migraines by a neurologist who was a woman about my age. When I started having severe RLS symptoms (not just legs but torso and arms along with severe insomnia), she was at a loss. She scheduled an MRI and EEG to verify that it wasn't something severe and then kind of passed off my complaints. I continued with her for treatment of my migraines even after I sent myself to a sleep doctor, who diagnosed my RLS. When I went in for one of my migraine followup appointments, I asked to switch my migraine med from zonisamide to gabapentin so that it would do double duty for my RLS. She told me straight up that she would be happy to write a gabapentin script for my migraines, but that it would not be effective for my RLS. When I asked why the FDA had just approved Horizant as a treatment for RLS and pointed out that Horizant is a pro-drug of gabapentin, she huffed "Well obviously you know more about this than I do" and walked out of the room. I decided that she was right and never went back. In retrospect, she was a perfect example of the fact that 50% of the doctors graduated in the bottom half of their class. She was acceptable for every day neuro issues like migraines, but did not keep up to date with anything else. In the long run, I have been much better off because my experience with her taught me what to look for when searching for a new doctor.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Madmom02
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Re: Specific doc at Mayo MN - Excellent discussion going on here about how to interact with your doctor

Postby Madmom02 » Fri Sep 23, 2016 1:10 am

If I have to I'm prepared to travel to CA to see Dr. B. I'm not the best communicator when it comes to medical stuff because I was brought up to ignore and smile. My Mom had kidney stones that were so painful she threw up but she kept smiling and told the doctor she was fine. I'm trying to be more honest about how I really feel and more direct in what I need. It's a fine line between stepping on the doctor's toes, I think, and asking for what we need.

I really appreciate reading about your experiences. I suspect men can get away with being more direct, etc than women. Just like I suspect if a man with my pain had cried, he probably wouldn't have been referred to psychiatry. But, I remember having to work so much harder to prove my worth because I was a woman and can see how female doctors might be prickly about it all.

Gender aside, my crying and wishy washiness can't possibly help me. I need to find a more even delivery and be a bit more straightforward in how I really feel.

Sweet sleep!

Moderator Note: I edited the title of this post to highlight the value of this discussion. - Beth

ViewsAskew
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Re: Specific doc at Mayo MN

Postby ViewsAskew » Sat Sep 24, 2016 3:59 am

You are not the first person here to have cried and have gotten a psych consult. Grrrr. Seriously? Clearly, they've never been a new mom - sleep deprived, hormones raging, and feeling incompetent...

Maybe they really see very few tears - maybe most people keep it together and only OBs tend to get the crying thing. I know that when I'm sleep deprived and I can't seem to make headway on things, crying is pretty common occurrence!
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Madmom02
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Re: Specific doc at Mayo MN

Postby Madmom02 » Sat Sep 24, 2016 4:30 am

I like the new mom analogy. The doctor I'm going to see at the Sleep Clinic is female (changed my appointment so I could see a woman) and she has a "special interest in how sleep dysfunction relates to maternal and infant outcomes" along with restless legs syndrome. I'm going to assume she's seen a lot of sleep deprived mothers. So, hopefully, she'll be more understanding if I do cry.

Funny thing is, I had no RLS when I was pregnant 13 years ago. After about six months of breastfeeding it came back but it was a lot milder then. "In the good ole days..."

Beth,thanks for changing the Subject. I don't think the change stayed.

ViewsAskew
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Re: Specific doc at Mayo MN + How to Choose and Talk to Your Doctor

Postby ViewsAskew » Sat Sep 24, 2016 5:50 am

I just changed the first post in the series - that should keep the title changed on subsequent posts.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Specific doc at Mayo MN + How to Choose and Talk to Your Doctor

Postby badnights » Sat Sep 24, 2016 9:25 am

I Was just intending to flag the one post, because the beginning of the Topic was different. (There is no way to make it stick midway). But I like this bold approach cuz it shows up in the Forum list.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Madmom02
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Re: Specific doc at Mayo MN + How to Choose and Talk to Your Doctor

Postby Madmom02 » Sat Sep 24, 2016 1:23 pm

I've read the Foundation's "First doctor visit" publication which is a great overview of what to take with you, what to expect the doctor to ask, and what a sleep study does. Maybe you all could write a primer about specific things to say/not say with little vignettes on "How to choose and talk to your doctor."

It could have some decision trees like "If your doctor says 'increase the dose', if you suspect you're augmenting say "x" or if you're at the maximum recommended dose say "y". :)


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