Two very different doctors' visits

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Rustsmith
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Re: Two very different doctors' visits

Postby Rustsmith » Mon Jan 01, 2018 11:28 pm

I've felt weird things in my heart all my life but doesn't everyone ... or do they?


The simple answer is No. Heart disease is one of the few things that I don't have to worry about. It isn't an issue in my family, which is why I got upset when my GP insisted that I see a cardiologist due to my very low resting heart rate. I told him it was simply Athlete's heart, but he insisted. Fortunately, I was right and he was wrong.

As for how can they find out, there are wearable heart monitors these days. A friend had to wear one as he went about life for a couple of days. His doctor was also concerned about an excessively low rate, but his wasn't due to being very fit. In his case they didn't find anything, but could have.
Steve

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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.

2BassetMom
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Re: Two very different doctors' visits

Postby 2BassetMom » Tue Jan 02, 2018 12:17 am

I am so glad you asked about A-Fib Beth. I was diagnosed about 2 years ago during an ER visit. I have had palpitations since I was 10 years old and I'm now 70. When I say palpitations I refer to a very rapid heartbeat that comes on suddenly. I could always get it to resolve by lying down. I started getting worse around 35 and wore a Holter Monitor which showed I had Paroxysmal Atrial Tachycardia. I had been taking Digoxin since then. All that to say that I was no stranger to funny beats. One morning 2 years ago I woke up with an erratic heartbeat. One that had no particular rhythm and this was new to me. At the ER the nurse took my pulse and said "you probably have a-fib." After being hooked up to a monitor and seen by 2 ER doctors it was confirmed that I had this. I found a cardiologist within the week who had an Electrocardiogram done which further confirmed the diagnosis. I was placed on blood thinner, Xeralto, and Metolprolol to slow down my heart beat. After my husband retired this year I had to change to Pradaxa instead of Xeralto because of the expense. I'm sorry about your Dad and I think your thoughts on this are right on. I would consult your doctor or a cardiologist with your concerns to alleviate any worry. If you have A-Fib you will learn to live with it just as we are living with RLS only A-Fib is easier. I get more tired easier but is that RLS or A-Fib? Or my Ramsay Hunt Syndrome which I got from having shingles in my ear back in 2008. I deal with the after effects of that daily. Also, I am a thyroid cancer survivor and after surgery required 8 weeks of radiation. I deal with those after effects too. None are as difficult to deal with as RLS has been. I hope this helps.

ViewsAskew
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Re: Two very different doctors' visits

Postby ViewsAskew » Tue Jan 02, 2018 6:08 am

badnights wrote:May I ask how you got diagnosed with A-fib and what, if any, symptoms you notice from it? My dad had it, but it wasn't discovered until after his second stroke. The ER doctor left him hooked up to the heart monitors for 6 days, suspecting AFib, but it took 6 days before an event occurred to confirm it.

If the doctors after his first stroke had done that, he might not have died when he did. But they put him on statins even though his cholesterol and blood pressure were fine. I insisted on a sleep study which showed he had severe OSA, so he got a CPAP, but he was still exhausted all the time and had episodes of apparent drunkenness even though he wasn't drinking, I don't know how else to describe it, that in retrospect were probably caused by episodes of irregular heartbeat leading to oxygen deprivation.

It's hereditary and I've felt weird things in my heart all my life but doesn't everyone ... or do they? So anyway I worry that I might have it and die needlessly before my time. But how to find out? if it's as episodic as it was with my dad, it won't be detected because they will never send me home with a Holter monitor for more than one day.


Yeah, as Steve said, we do not all have weird heart feelings/sensations. I started getting palpitations in my thirties, but never had them before so they seemed terrifying at first. What a strange feeling! Thankfully, after wearing a Holter for awhile and having a few other tests, they are not a-fib and are "just" benign palpitations. But, at least I know.
Ann - Take what you need, leave the rest

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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.

2BassetMom
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Re: Two very different doctors' visits

Postby 2BassetMom » Tue Jan 02, 2018 5:36 pm

Good news! I have an appointment with the Scripps sleep Center in San Diego for February 20. I was surprised to get in that soon. We live in northern Idaho so it won’t be easy But one of our sons lives there so that makes this possible. I have a message in to the PA at the pain clinics c telling her of my dire circumstance with my oxycodone. If I don’t hear back soon I’ll be calling. Holding up ok so far.

ViewsAskew
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Re: Two very different doctors' visits

Postby ViewsAskew » Wed Jan 03, 2018 8:34 am

Great news about the appointment!
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.

2BassetMom
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Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Fri Jan 05, 2018 9:24 am

I was able to get my oxycodone refilled after a frustrating day of phone calls to the clinic. My PA upped the dosage from 5 mg to 7.5 and the change was amazing. I was able to get more sleep. I still don't sleep through the night but do get 3 hours at a time on average. I only have gotten up once during the night since the change. I hope this continues. I'm going to spend a week with my brother in Palm Springs. I don't usually seek to escape winter but with all the anxiety of the last few months I decided a week in the sun would be nice. After returning I have the quality care center visit to look forward too. Sometimes our difficulties ease up for a bit of time and for that I am so thankful. Stay warm and be safe you who are in the Midwest and Northeast of the US.

Polar Bear
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Re: Two very different doctors' visits

Postby Polar Bear » Fri Jan 05, 2018 4:19 pm

Isn't it such a relief when our meds are safely in our hands. We shouldn't really have to feel such desperation.
Very glad to hear it has worked out ok and you have the bliss of better sleep.
Enjoy your break in Palm Springs - well deserved.
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

2BassetMom
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Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Sat Jan 06, 2018 6:06 am

Thank you. I’ve got to say that we have a pharmacist who is very caring & understands my issues.

badnights
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Re: Two very different doctors' visits

Postby badnights » Sun Jan 07, 2018 11:35 pm

I'm glad you're keeping a positive outlook. Enjoy your trip to the sun!
Beth - Wishing you all restful sleep tonight
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2BassetMom
Posts: 108
Joined: Mon Mar 30, 2015 7:06 am
Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Fri Feb 16, 2018 5:37 am

I fly down to San Diego to the Scripps Clinic this Saturday for my appointment on Tuesday the 20th. This morning I had an appointment with my PA for my 3 month medications check-up. It was truly amazing. After confirming the move from the 5mg of oxycodone to the 7.5 was managing my pain better, I mentioned that the restless legs were becoming more bothersome than the pain. This was a big step because I didn't know how that would affect my treatment plan. She said she had suffered from rls in the past and she completely understands what I am going through. She took extra calcium to relieve her symptoms but she also said she knows what works for one person does not mean it will work on another. We talked about the quality of life changes and the need to find the right med. Wow, I kept thinking "she gets it"! Upon telling her about my upcoming visit to San Diego she told me to let her know when I get close to running out of my oxycodone and she will make sure I get it refilled. That's it in a nutshell. I will be posting about my clinic visit probably under another topic. I am feeling especially blessed after my appointment this morning.

ViewsAskew
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Re: Two very different doctors' visits

Postby ViewsAskew » Fri Feb 16, 2018 6:15 pm

Great to hear. Really great to hear. Am looking forward to hearing about the clinic itself. It's not too far from me and we may eventually move to San Diego instead of LA - and having an option there would be wonderful.
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.

2BassetMom
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Re: Two very different doctors' visits

Postby 2BassetMom » Fri Feb 16, 2018 9:28 pm

I will be posting as I can while in San Diego. I'm excited to start the process. Also, I forgot to mention that as I was leaving my appointment yesterday, my PA asked me to bring back as much info as possible from the clinic because she has several patients with rls. We don't hear that very often.

ViewsAskew
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Re: Two very different doctors' visits

Postby ViewsAskew » Sat Feb 17, 2018 6:48 pm

2BassetMom wrote:I will be posting as I can while in San Diego. I'm excited to start the process. Also, I forgot to mention that as I was leaving my appointment yesterday, my PA asked me to bring back as much info as possible from the clinic because she has several patients with rls. We don't hear that very often.


I seem to recall that the Foundation used to have a program where you could make a doctor the recipient of RLS materials...no time to research right now, but something that we should review and see if it still exists.
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: Two very different doctors' visits

Postby badnights » Sun Feb 18, 2018 8:28 am

as I was leaving my appointment yesterday, my PA asked me to bring back as much info as possible from the clinic because she has several patients with rls. We don't hear that very often.
Yay!! That's great to hear.

I seem to recall that the Foundation used to have a program where you could make a doctor the recipient of RLS materials..
You buy them a membership. Physician members used to get a printed copy of the Medical Bulletin and updates on the latest research news, but I don't think the updates were maintainable. Now, though, they pay a bit more, they become a member of the "Healthcare Providers Network", but other than the price and name, it seems they get nothing that regular members don't also get. Odd.

I have often thought of buying my doctor a membership. But she's pretty good and clearly has been learning things ever since she first got me as a patient, so there's not really a need.
Beth - Wishing you all restful sleep tonight
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2BassetMom
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Location: Idaho

Re: Two very different doctors' visits

Postby 2BassetMom » Sat Feb 24, 2018 1:36 am

My appointment at Scripps was worth the trip down from Idaho. I saw Dr Poceta & he knows all there is to know. He’s no-nonsense but still kind. I will have a sleepover as soon as they get a cancellation. They know it has to happen before I fly home in March 6. I had a blood draw for my ferritin level. He’s trying me on a Neuro patch, 1 mg every 24 hours. I applied the first one last night and didn’t have restless legs at all. Also he was s going to have me switch to OxyContin for better results. That’s it so far. I’m encouraged.


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