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

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

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

Postby Madmom02 » Mon Sep 12, 2016 7:58 pm

Hi!

New poster but longtime lurker.

Have had RLS since 1987, when I was 26. It has gotten progressively worse until I now have it anytime I'm not moving. It's in my legs, arms, trunk, and back of my neck. It was originally a tugging feeling, then creepy crawlies, and now it feels like little bugs are biting my bones. Ferriten level is 117. My dad had PLMD and I have 3 siblings with RLS.

I've been on:
· sinemet (l'dopa?) (augmented and did not return to baseline),

· gabapentin (worked great for years, hit max dose, and it stopped working. Retried two years ago and it gave me pitting edema & added to my severe depression),

· clonazepam (worked up to 3mg? per night dose, it stopped working. Weaned off it this Spring, take small dose occasionally to knock myself out for a few hours when I'm desperate. Makes me very weepy the next day).

Currently augmenting on .125 Pramipexole, which my Neuro wants me to increase to .25 because, in his opinion, it does not cause augmentation. I started taking it 8/16/16 and the RLS started coming back last Tuesday, 9/6/16.

I have multiple sclerosis and IBS along with chronic severe depression that is treatment resistant.

I take 5 mg oxycodone up to three times a day for "severe degenerative disc disease" and SI joint dysfunction pain prescribed by my primary care. I take it as I need it but am very conservative about it. I'll let my back pain hit an 8 before I take it. It doesn't really do much for the pain, TBH. I think it just makes me care a little less about it, if that makes sense. I was on oxycontin (which is the extended release version) last year but was scared of the large amount I needed for the pain (40mg+ and every 6 hours because, as we now know "12 hour relief" was pharmaceutical company marketing).

I've noticed that when I take the oxycodone, the "bugs stop biting" for a few hours. Until two nights ago, I had never taken it to stop the RLS. I have a pain contract and it was not prescribed for RLS and I'm absolutely terrified of getting addicted. Two nights ago, I stopped taking the .125 Pramipexole dose because it wasn't working. The first and second night, when the RLS got bad enough, I took 5mg of the oxycodone. The RLS stopped and I got my first real sleep since Tuesday - 5 hours the first night, three hours last night.

Today, I took 5mg of the oxycodone at 7am for my back. It gave also gave me some relief from the RLS. By 10:15 this morning, the RLS was really bad so I took another 5mg to try to get some sleep. I dozed until 2:15 with the RLS as a kind of background noise until it ratcheted way up.

I have a bar of soap on my mattress, I've tried compression stockings, Vitamin D, massage, tickling, cold water, hot water (have to be careful with that one because the MS and heat don't mix well), stretching, a Chi machine, and moderate exercise. I don't drink alcohol or anything with coffee in it, I don't smoke, and I gave up my beloved chocolate months ago.

TL;DR I have severe primary RLS. Neuro doesn't believe I'm augmenting on Pramipexole because that doesn't happen. Does anyone know a Madison, WI or Mayo MN doctor who "gets" RLS.

Thank you for your help. Hopefully, I can return the assistance somehow.
Madmom

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Specific doc at Mayo MN

Postby Rustsmith » Mon Sep 12, 2016 8:59 pm

Madmom02, the RLS Foundation has a list of Quality Care Centers where the doctors not only "get" RLS but are often some of the leading researchers. You can find the list at http://www.rls.org/qcc-directory, and you will find that the Mayo Clinic has a number of doctors listed. As a word of warning about the Quality Centers, because of the limited number of doctors and the huge number of severe RLS patients trying to get to them, be prepared for a wait. The first available appointment could be several months. But it will be well worth it.

As for your neuro stating that you cannot augment on pramipexole, there are a lot of things that I would like to say, but I will keep it clean by stating that he/she is in error. Pramipexole probably causes augmentation in more people that any other dopamine agonist (although ropinirole would be close).

Also, many of us highly recommend that you get a copy of the book "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It costs about $25 from Amazon, was written to guide physicians (like your ignorant neuro) but is also easily understood my most patients.

Finally, since you are already on opiates, I would recommend taking a look at this YouTube video presented by Dr Earley at Johns Hopkins (one of the top experts on RLS in the world). It might help you understand more about what you have been taking, the very low probability of addiction and why you might want to consider trying a different opiate that might cover both your back pain and your RLS. https://www.youtube.com/watch?v=iCNI_UCj7SI
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
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Mon Sep 12, 2016 9:23 pm

I saw the list of drs. but f o rgot about it (thanks MS and sleep deprivation). Thank you for pointing it out!

The new edition of the Clinical Mgmt book is $30.00 so it's out of my budget for now but I'd like to recommend it to my neuro (who, btw, has been wrong about a big MS thing, too). I just don't know how to tell him about it. I'm a wimp. Suggestions?

Thanks for the link to the YouTube video. WI is very conservative about opiate rxs these days and I'm not sure how to tell my neuro or my pcp about them without coming across as a drug seeker. Guess I need to pull up my big girl pants, yeah?

Thank you for your help!

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Tue Sep 13, 2016 8:19 am

Well, it's a valid concern to not be regarded as a drug seeker. An alternative to the book is the WED/RLS Medical Bulletin for Healthcare Providers published by the RLS Foundation. This brochure is free to members, and if the membership is out of your budget (it costs about the same as the book, I think) you can apply for a scholarship membership - - instructions can be found at http://rls.org/members-only

Take that brochure, and the freely downloadable one called Augmentation and its Treatment http://rls.org/file/publication-loader/ ... tation.pdf
Read them carefully yourself, at least the parts relevant to you, and highlight the two or three parts your neuro absolutely must read, on printed copies that you will give him to keep. You have to make this easy for him (sad, but true). Then when you see him next, say you were researching the disease, and the RLS Foundation provided you with this information, and could he please give you his opinion of it - specifically these parts you've highlighted....

Instead of asking for opioids, describe your symptoms and their impact on your life, succinctly and clearly - eg. I sleep less than 4 hours a night, I can no longer think clearly during the day, and I'm falling asleep driving - or whatever - and ask him to help you. Since he's in the business of helping people, and if he's not a total jerk, and if you make it easy for him to find the information he's missing (without thinking he should already know it, because no doctor can know everything), then he should eventually become effective at helping you. One would hope. This approach has worked for other people, it worked for me, and it will work for you if your doctor is even half-alright.
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

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Tue Sep 13, 2016 8:19 am

Or, go to a Quality Care Center :)
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
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Tue Sep 13, 2016 4:46 pm

Thank you Rustsmith and badnights for your help in pointing me in some good directions! I'm really struggling with all this, as so many of us are. I'm antidepressant-free for the first time since 1991 because of resistance and nortriptyline-induced high blood pressure and I know I need sleep to prevent a relapse of severe depression. I'm taking lots of different steps (good sleep hygiene, better overall diet, Vitamin D and Fish Oil, exercise) towards that end but the RLS has me flummoxed.

This board has been so helpful. Thank you!

Rustsmith
Moderator
Posts: 2556
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Specific doc at Mayo MN

Postby Rustsmith » Tue Sep 13, 2016 5:10 pm

Madmom2, I should have added that I completely understand the complications imposed by your MS. I do not have it, but my wife of 43 years has had it since she was 16, two years before we even met. Much like RLS, she wasn't officially diagnosed until eight years after her initial symptoms. It wasn't until her mother was on her deathbed that we found out that her GP had initially suspected MS, but did nothing other than advise her parents and then they all kept quiet.

So, far all these years I was the caretaker. Now she gets particular enjoyment when she is the one who has to take me to see the neurologist because I am sufficiently sleep deprived that I cannot always be trusted to make the 2.5 hr drive by myself. She has also been the one to advise me of the side effects of many of the meds that I have been given, because she took each of them years ago. Thanks to my severe RLS, she also is now learning to differentiate her MS issues from the mild secondary RLS that she is starting to get via her MS.

As for the hot water/MS issue, she actually used that to her advantage MANY years ago. She had to see a state assigned doctor to sign off on her application for Social Security Disability. MRI's were used for MS at that tine, so all he could do was see her as she walked into the office. She had a long soak in a hot bath that morning so that her stride was pretty bad that afternoon. There was no question that she wasn't able to walk very well nor that she was able to fake it. He signed off without asking any questions and then interviewed her about her MS for his own education. :D
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.

JimmyLegs44
Posts: 82
Joined: Thu Oct 01, 2009 5:24 am

Re: Specific doc at Mayo MN

Postby JimmyLegs44 » Tue Sep 13, 2016 6:03 pm

Last November, I went to Dr. Michael Silber at Mayo Clinic in MN. I found him to be extremely knowledgeable about RLS.
The best way out is always through. - Robert Frost

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Tue Sep 13, 2016 6:05 pm

RustSmith,
Clever woman, your wife. I'm very sorry she's keeping company with the MonSter and RLS and that you're fighting the RLS, too. My husband has PLMD but denies it - we don't share a bed because he says my jiggly legs drive him nuts.

Heat - anything above about 68` (sorry, no degree sign on my Kindle) - mucks up my thinking and my walking. My MS dx was pretty fast - mix of symptoms a few months after moving to a very hot city led to an MRI and spinal tap and bang! No hints, no warning. (My SSDI approval was quickly, too. 1st application, no appointed doctor, no lawyer. :( )

Did you know they used to diagnose people with MS by putting them in a hot bath?

Have you ever seen any info about heat and RLS?

MadMom

Madmom02
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Tue Sep 13, 2016 6:08 pm

JimmyLegs44,
I'll put him on top of my list! Thank you!

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Wed Sep 14, 2016 8:45 am

Madmom
There is only anecdotal info on heat and RLS. Heat can make the physical sensations go away. For me, it has to be very hot water. Heating pads are OK, but not as good, and sometimes can backfire. For a significant but smaller number of us, heat is terrible and icy cold works well. Whereas if I stuck my legs in icy cold water, my WED would go bananas.

The only theory I've heard to explain this is the usual one of - my brain is off, I forget the words... -where one sensation (heat) dominates so you don't notice the other (WED/RLS) . It seems more accurate to me to say that the WED sensations actually don't exist during the time that the sensory pathways are filled with heat sensations.

I hear you about needing sleep to keep the depression away! Have you tried adding raw fermented vegetables to your daily intake? My low-grade but constant depression and anxiety went away when I started doing that (to control small intestinal bacterial overgrowth), and I have only twice felt mild depression since. Gut health is a crazy important thing, especially for people with neurological and auto-immune disorders.
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
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Wed Sep 14, 2016 7:02 pm

I think the one sensation cancelling the other out may be why massage, tickling, or compression work for some.

I have not tried fermented anything but I'm about to embark on the Overcomg MS Diet and I imagine there is room for fermented veg on that. I'll let you know. Thanks for the suggestion!

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Fri Sep 16, 2016 7:39 am

The diet I started on (and am still kind of on) is the Wahls diet, which was designed for MS. The fermented veg have to be raw, otherwise the good bugs have been killed in pasteurization.
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
Posts: 113
Joined: Sun Jul 10, 2016 11:27 pm
Location: My heart lives in the mountains

Re: Specific doc at Mayo MN

Postby Madmom02 » Fri Sep 16, 2016 11:03 am

The Overcoming MS diet is the original Swank MS Diet modified by Jelinek. It's pretty much opposite of Wahl's - fish and veg, no land based animal meats, no saturated fat or dairy with Vitamin D and omega 3 supplementation. I was on the Swank diet for a couple of years after I was diagnosed but fell off it when I married a meat & potatoes guy. The NMSS just funded studies of both of them - interesting times.

I definitely think there is a gut connection to MS, RLS, etc. - I'm interested in adding fermented raw veg. Questions:
1. the MS is mucking with my autonomic function which has caused variable high blood pressure and heart rate (along with impaired sweating, etc). My bp is salt-sensitive. Do you think the fermented stuff is ok considering that?
2. I have to be really careful with my energy because I haven't got much - MS fatigue plus RLS sleep deprivation is exhausting. What's easy in the fermented raw veg department?

I read through some of your previous posts about the good bugs/bad bugs. Have you noticed a difference with the RLS? And, if I may, why are you just "still kinda on" the diet?

Thanks for your help!

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Specific doc at Mayo MN

Postby badnights » Sun Sep 18, 2016 8:36 am

The easiest would be - in my opinion - to ferment radishes or carrot sticks or turnip sticks, or something like that, that you just clean and cut up. Cabbage takes effort - it's recommended that you squeeze the shredded cabbage by hand til it sits in its own liquid. But you can do it the other way too, like radishes and carrots: buy organic (no pesticides that kill the good bugs), clean them, cut them up, place in a well-rinsed (soap free) jar with salt water and (if desired) spices & herbs (eg. mustard seed and bay leaf for radishes, whole garlic cloves for anything), then keep the vegetables below the water for 7-10 days. That's the hard part, There are fermentation pots with wooden circles that fit into the jars, but most jars narrow at the neck so it's hard to find something that will fit inside that;s not metal and preferably not plastic, and you might be stuck with double-bagged plastic baggies of water, which I use.

IT's dead easy. My first few batches were lovely, but it's been hit or miss since then, maybe because I didn't always buy organic.

I'm no expert but yes, the fermented veg will contribute to your total salt intake, so if you're eating more salt there, you have to eat less elsewhere.

It is possible to make low-salt and even salt-free fermented veg, but it's the salt that keeps the environment hospitable for the best kind of bacteria, so you apparently get better sour flavors with salt, and crunchier vegetables. I have a wonderful book by Sandor Katz who has made fermented cabbage using wine, using caraway, celery and dill seed, and using seaweed as salt substitutes. The last is not salt free, but is lower in sodium chloride. The method for wine kraut is the same except you use wine instead of salt-water. I haven't tried 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


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest