It's settled! Seeing specialist!

For everything and anything else not covered in the other RLS/WED sections.
leggo_my_legs
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Re: It's settled! Seeing specialist!

Postby leggo_my_legs » Mon Oct 30, 2017 8:11 pm

I will! Right now I'm killing time until my appt which is at 3 pm. I wasn't too tired from the lack of sleep last night until about 11 am and then it hit me.

Of course you guys don't need a blow by blow of my trip. I'm just trying to stay awake!

It feels so good to be doing this for myself. Like, I am imlortant.

Rustsmith
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Re: It's settled! Seeing specialist!

Postby Rustsmith » Mon Oct 30, 2017 8:16 pm

I was going to wish you luck, but that seems rather ridiculous at this point. 1) you made the decision, 2) you are starting with a really great doctor and 3) you got in to see him in almost record time! If that isn't a great streak of luck for any of us, I don't know what is. :)
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.

badnights
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Re: It's settled! Seeing specialist!

Postby badnights » Tue Oct 31, 2017 3:02 am

It feels so good to be doing this for myself. Like, I am important.
You are! It's great that you feel it!
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

leggo_my_legs
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Joined: Sun Oct 16, 2016 12:29 am

Re: It's settled! Seeing specialist!

Postby leggo_my_legs » Tue Oct 31, 2017 3:58 am

All, thanks so much for following my little journey here...this is going to be a long post.

Rustsmith :lol I do still need luck but maybe not quite as much now, hopefully.

I'm still at the airport, flight home leaves in 2 hrs. Argh. Tried to get earlier flight, they wanted $95 for the empty seat...nope nope nope.

I really liked Dr B. It was a very interesting and helpful consultation. He said he suspected my issue with norco wasn't tolerance, but was a timing issue as to when I was taking it; since I wasn't tracking when exactly, we're not sure.

He actually said he thought the emotional symptoms I was reporting may well be something else and if so, he thought that might be hard to tease out. (I've had depression before and this is a bit different, but it's a point).

That freaked me out a little bit and scared me, for if I'm not sure what's causing it, how am I going to get better??? But I really respected him for saying it. (Contrast with my current sleep MD who basically told me she thinks my symptoms must be the PMLS.)

He said it because my PLMs were 248 in 4 hrs in the study, and my awakening index was 12. He said he gets people with double this. (Does anyone have insight on these numbers and their own symptom levels? I'd be curious to hear if anyone has severe symptoms with similar numbers).

He wrote me a rx for oxycodone and lyrica anyway (I didn't ask...he seemed to be saying both things at the same time...this may *not* be caused by RLS/PMLS, *and* let's treat it.) Which at first I was confused by and later actually appreciated. He also didn't say any dumb anxiety provoking stuff like 'well we won't know until we try,' etc. Which is exactly the kind of thing my sleep doctor would say.

While it was a bit emotionally difficult just due to my own expectations, it opened up a whole new level of inquiry for me. Might I be focusing too much on fixing the RLS/PMLS that I'm missing something else important?

These were questions I was asking myself; he wasn't asking me. Which I really appreciated...that he wasn't trying to act like he knew the answer to that and he wasn't trying to bully me into accepting any kind of diagnosis or non-diagnosis. He strikes me as a man who is confident in his specialty, and humble outside of it.

I found myself wondering about menopause...which I finished a year ago...and these fatigue and mood symptome have been worsening in the past few years. So this, among other things, is something for me to consider. Heck, maybe there's even a placebo effect for the meds. Who knows?!

I still feel that my symptoms are caused by the PLMs, but I also have an open mind now, which I think is important and that in itself was worth the trip!

The other thing that made the trip hugely worth it was to be treated with respect, and to take my health and level of distress seriously, and have my doctor do the same. Friends, it made me feel like gold!

I didn't realize how disabled, immobilized, and incapacitated I had become in response to the condescending, patronizing, arrogant, rigid, and judgmental behavior of my doctor and the medical field in general towards those who take pain meds.

I wondered, what would my sleep doc think? I worried that she'd think I was being too extreme and say something like, 'I don't know what they'd do that I wouldn't." What would the pharmacy think of say?

As it was, I solved both of those problems in the waiting room after the consultation. I fired my sleep doctor via voicemail :lol (I had to do it before she fired me when the pharmacy calls her about my new rx from out of town MD).

I said "I am seeing an RLS specialist and I will let you know if I need help in the future. Oh, and you don't need to worry about the norco rx because I'm not going to fill it." :lol:

Then I let Dr B's office send the rx electronically so I don't have to deal with the suspicious and rude costco lady. When I go pick it up, when they try to educate me about addiction, and especially if they have an attitude about it, I m gonna bring some articles for them to read too. So the conversation is gonna go both ways.

I am hopeful about the new meds.

ViewsAskew
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Re: It's settled! Seeing specialist!

Postby ViewsAskew » Tue Oct 31, 2017 4:14 am

So happy to read this. The tenor is that of another person - you found a new (or old) you there, it sounds like.

I have always liked him. I worry, though, that we put these docs on such a pedestal that they cannot possibly meet our expectations. Yet, he seems to, or come close, most of the time. He is a good man, I believe.

His wife, I think, is a general practitioner (or was). I am going to ask him for a recommendation for a primary care doc since my first choice last year was awful.
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: It's settled! Seeing specialist!

Postby Rustsmith » Tue Oct 31, 2017 1:35 pm

Glad the appointment went well and that you are feeling better about everything as a result.

You asked for sleep study numbers for comparison. In my first study, I did not have as many PLMS (108 with an index of 29.2), but I had other arousal issues so that my arousal index as 32.7. I hadn't realized until I just reviewed the report again that during the almost six hr study I only was asleep for about 3.5 hrs. I remember that I was very tired before starting my RLS treatments, but I didn't realize that I was that bad.
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.

Polar Bear
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Re: It's settled! Seeing specialist!

Postby Polar Bear » Tue Oct 31, 2017 1:38 pm

leggo - Well check you out !!

It's a different person.. you are in control. I wanted to cheer when you were in a position to fire your sleep doctor ... and then did so.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

debbluebird
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Re: It's settled! Seeing specialist!

Postby debbluebird » Tue Oct 31, 2017 6:30 pm

Wonderful. Glad you made it there.

leggo_my_legs
Posts: 278
Joined: Sun Oct 16, 2016 12:29 am

Re: It's settled! Seeing specialist!

Postby leggo_my_legs » Thu Nov 02, 2017 2:16 am

Thanks everyone.

Steve, thanks for the numbers...wow! Glad you have a good regimen now.

Only issue with rx was they have to order it. It should be in tomorrow. Its hard waiting because he took me off klonopin so I have nothing right now. When I go see my PCP in Dec, I'll definitely find out if my former sleep doc put a bug in his ear about me being on the new med rxd by a doctor out of the area.

I got my blood results back. One of my liver enzymes, AST or was it ALT? , is elevated and I have borderline high cholesterol but I don't think it's urgent as my doctor didn't call me. In the meantime I'm working on diet and exercise as best I can.

debbluebird
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Re: It's settled! Seeing specialist!

Postby debbluebird » Thu Nov 02, 2017 4:32 am

Do you have to stay with that pharmacy, since they,have been a pain ? Or is it an insurance issue?

ViewsAskew
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Re: It's settled! Seeing specialist!

Postby ViewsAskew » Thu Nov 02, 2017 5:04 am

Congrats on the working out and eating healthily.

Could be completely unrelated...while elevated liver enzymes can be many things, they are often associated with unidentified auto-immune disorders. Hubbie had them for 10 years, along with other odd problems such as a tic in his eye that lasted a year, anxiety that would take over, RLS, and symptoms that mimicked a heart attack (he was in the emergency room three separate times for this)- among other things. Never could find a problem, so always sent him home and told him to deal with stress better. Until he lost 30 pounds in a few weeks and went from 160 to 130 pounds and they finally identified celiac disease.

Not saying you have celiac or an AI disease! If they know why these are elevated, great. If not, just watch it over time and if other weird stuff happens, see someone who might be able to look at the whole thing and see what it might be.
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.

leggo_my_legs
Posts: 278
Joined: Sun Oct 16, 2016 12:29 am

Re: It's settled! Seeing specialist!

Postby leggo_my_legs » Fri Nov 03, 2017 1:45 pm

ViewsAskew wrote: If they know why these are elevated, great. If not, just watch it over time and if other weird stuff happens, see someone who might be able to look at the whole thing and see what it might be.


I have nonalcoholic liver disease, ie fat deposits in my liver. It can cause elevations, but I had it without that before. Might have also been the recent prednisone and multiple meds I was on for post infectious asthma.

You'd think at least my PCP would call or email me and say, 'Eat a low fat diet and don't drink until our appt.' I know those things because I'm health literate and also looked it up, but what if I wasn't? He's waiting until my appt in late Dec to address it.

debbluebird
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Re: It's settled! Seeing specialist!

Postby debbluebird » Fri Nov 03, 2017 7:36 pm

Just try eating healthy, fresh veggies, grass fed meats and butter. Organic, nothing processed, no artificial anything, no sugar, no wheat flour, no potatoes. You will lose weight, also helping cholesterol. That's what we do. Husband's blood sugars are normal, went off diabetic meds. You are already exercising which is good too. All of that helps. Good luck, I know how hard it is do it.

leggo_my_legs
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Joined: Sun Oct 16, 2016 12:29 am

Re: It's settled! Seeing specialist!

Postby leggo_my_legs » Sat Nov 04, 2017 4:56 am

Thanks Deb.

badnights
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Re: It's settled! Seeing specialist!

Postby badnights » Tue Nov 07, 2017 5:49 am

I knew you'd feel it was time and money well spent to see Dr B! So happy for you. Do you have to hunt for a new general practitioner now?
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


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