Good RLS Doctor in Missouri?

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alcharla
Posts: 15
Joined: Fri May 23, 2014 10:36 am

Good RLS Doctor in Missouri?

Post by alcharla »

I live in mid-Missouri and need a doctor knowledgeable about rls. I've been to three neurologists whose goal in life seemed to be to turn me into a zombie. I've been to a pain specialist who recently implanted a spinal cord stimulator. I'm seventy years old and have had rls and severe scoliosis since my teens. I'm currently getting off Mirapex...down from 2mg per day to none for the last two days. The only thing getting me through is that I have sixty Percocet left from the implant. So far two a day have made life bearable...more or less.

I can probably get myself off Mirapex by using the Percocet but then I'll have to figure out how to deal with 24/7 rls symptoms. If anyone knows of a good doctor in Columbia, Kansas City, or St. Louis I'd certainly appreciate knowing who to contact!

Thanks for your help!

ViewsAskew
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Re: Good RLS Doctor in Missouri?

Post by ViewsAskew »

There is a thread in the General Topics that lists doctors that people have mentioned. Not sure if any Mo docs are in there. There is a good doc at Mayo in Rochester (Dr Silber), but that is quite a drive for you.

One thing I've done before is to search (using Google or another browser) on : RLS [state or city you live in]. That will often find research articles, newspaper articles, and the like. Now that we're seeing WED used more, you could search once with RLS and once with WED. If I see a doctor writing about WED/RLS in science journals, I'm often much more confident that the doc is well-versed in it.
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.

alcharla
Posts: 15
Joined: Fri May 23, 2014 10:36 am

Re: Good RLS Doctor in Missouri?

Post by alcharla »

Ann, I had hoped to hear from someone who'd had a good experience with a specific doctor. So far I've seen a number of doctors, none of whom seemed very helpful. Maybe that's just the nature of the disease; I know it's hard to diagnose and treat, but except in my first few years with Mirapex, I've been fairly miserable. Thanks for the suggestions, though!

Polar Bear
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Re: Good RLS Doctor in Missouri?

Post by Polar Bear »

Educate yourself and educate your GP in as far as he/she would be acceptable to this.
This can work very well in the absence of any alternative WED/RLS Expert.

Have you seen the recommendations for this book - it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Please excuse me if this information has already been given to you on another thread.

I do hope that someone can recommend a good WED doctor within travelling distance for you.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

alcharla
Posts: 15
Joined: Fri May 23, 2014 10:36 am

Re: Good RLS Doctor in Missouri?

Post by alcharla »

Thanks for the suggestions. I do have the book; I thought I'd copy sections for my doctor. He's not too amenable to suggestions so I need to give him small bites. I will get this back under control. A dozen years on Mirapex has about done me in!

Polar Bear
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Re: Good RLS Doctor in Missouri?

Post by Polar Bear »

It can be tough going if GP isn't good at accepting 'suggestions'.

I feel for you, we really are all on an upward struggle.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Good RLS Doctor in Missouri?

Post by ViewsAskew »

alcharla wrote:Ann, I had hoped to hear from someone who'd had a good experience with a specific doctor. So far I've seen a number of doctors, none of whom seemed very helpful. Maybe that's just the nature of the disease; I know it's hard to diagnose and treat, but except in my first few years with Mirapex, I've been fairly miserable. Thanks for the suggestions, though!


That's why I suggested the thread - it's all of the posts we could find related to specific doctors. I assembled them in one thread. But, we don't get a lot of people who recommend their docs (wonder why....OH! because there are so few!).

OH! Rubyslippers! She's a member and is from MO - maybe KC? But, that's a wild guess. She doesn't post here often anymore, but if you find her in the list of members you can PM her - usually that sends an email to the person's email account. It's worth a try.
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.

alcharla
Posts: 15
Joined: Fri May 23, 2014 10:36 am

Re: Good RLS Doctor in Missouri?

Post by alcharla »

Update: Percocet made things worse. So I dropped all meds except 1/2 mg Mirapex and my symptoms are only noticeable for an hour or so in the late afternoon before I take the Mirapex. I think I was on so many drugs that my system was on total overload. I'm sleeping better, feeling much better all over, and hope the symptoms don't get worse. I'm aware that I'm not out of the woods and that the Mirapex can start being totally ineffective. However, if I can get this level of comfort without anything but a small dose of Mirapex I'm happy.

Thanks for all the suggestions. This discussion is ivaluable!

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Good RLS Doctor in Missouri?

Post by Polar Bear »

It is so good to hear when someone has found some relief. Long may it last.
However, please take note that your dosage is .5mg Mirapex.
The max daily dose of Mirapex is now considered to be .25mg which is much less that we were being advised a couple of years ago.
Check on your ferritin serum level with a blood test, you want it to be over 100. especially when taking mirapex.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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