Have to go to one of the specialty clinics...but which one?

pamndorr · Post by **pamndorr** » Fri Oct 21, 2011 10:08 am

The doctors want me to go to one of the specialty hospitals for evaluation. They suggested Mayo Clinic, Cleveland Clinic, Chicago Hospital, U of M or John Hopkins. One of the drs thinks I should go to one of the Mayo clinics...problem there is that the nearest Mayo clinic to me is in Rochester MN...quite aways from MI. I have had all kinds of suggestions from different people about which place would be best to go to...but they didnt go to these places for WED.

I have been looking into the different places and seems that John Hopkins does research for WED. They are in Maryland..which is quite aways from here and driving at this time of year is out of the question not to mention it would take us forever to get there because I cant sit long enough...we would be stopping often so I could get out and walk. So flying is about the only option if I go there. The other places are much closer but if I am going to do this then I want to make sure I go to the place that can help me the most...I plan on only dong this once.

I know I have to go to one of them..I need a life again....all these drug changes are starting to take a toll on me. I am wore out and really not sure I want to keep fighting this disease....I dont even know who the heck I am anymore. The person I used to be is gone and looks like she's not coming back...pretty much sucks. I thank the Lord every day that I have my husband..not sure what I would do without him...he is my rock.

Any advise would be greatly appreciated...I have to let them know soon if and where I am going to go. Can life get anymore complicated than this? I sure the heck hope not.

Have a good day everybody...

dogeyed · Post by **dogeyed** » Fri Oct 21, 2011 1:57 pm

Cleveland Clinic is in Northern Ohio, but I guess you already had figured the mileage. Looks like a train might be a good bet, if you can easily drive to a town that has Amtrak, and go to the particular campus in Ohio that have docs that treat RLS. The train might work, too, for Mayo Clinic in Minnesota, the largest hospital complex in the world, surely the train goes to Rochester.

Post by **Chipmunk** » Fri Oct 21, 2011 2:43 pm

But where would she get the best care? I only hear of Dr. B but he is in CA.

Post by **ViewsAskew** » Fri Oct 21, 2011 10:04 pm

If I had to travel, I'd get on a plane and see (in no particular order):

1. Dr Rye - Emory University, Georgia

2. Dr Allen or Earley at Johns Hopkins

3. Dr Buchfuhrer - southern California

There may be others that are just as good, but these three are instrumental in RLS/WED research, the Foundation, and they "get" the big picture for us. I do not know Earley at all. Dr Allen seems nice, but I've only talked to him a few times for short periods. Dr Rye also has RLS; his focus has been on the genetics, but because he has severe RLS, he really gets what we go through.

So far I've not found a doctor of that caliber in Chicago. I'm not saying they don't exist, I've just not found them. The sleep lab at Rush is excellent, but they had to refer me to another RLS doctor. It took 4 months to get an appointment. I wouldn't recommend her.

I'm currently seeing Dr Lisa Shives at Northshore Sleep center or something like that. She has been pretty good to work with, but she needed to work with Dr Buchfuhrer on the medication aspect because she'd never used methadone before. If I were choosing someone, I'd want someone who'd used ALL medications and knew what the typical responses to them are, etc.

D4 · Post by D4 » Sat Oct 22, 2011 3:00 am

I go to Dr. Silber at Mayo Clinic in Rochester. (He is one of the authors of the RLS treatment algorithm.)

I live in Illinois (not near Chicago) so it takes 2 flights to get there. It is well worth my time and money to see him.

I knew I had WED and PLMD, but my local neurologist said he'd never dealt with anybody as bad off as me. He recommended I go to Mayo Clinic.

Dr. Silber diagnosed me with an additional sleep disorder which is much more debilitating than WED and PLMD. It is so rare my local neurologist was unfamiliar with it. This other disorder is the reason why I'm so messed up.

My body is super sensitive to medicines. Most doctors ignore me on that, but Dr. Silber understands and prescribes accordingly. The only drugs for that disorder just treat the symptoms and my body can't tolerate any of them.

I feel fortunate to have him as my doctor. Good luck in whatever you decide.

fraujoolie · Post by **fraujoolie** » Sun Oct 23, 2011 6:40 am

I was born and raised in Michigan -- moved out to Los Angeles about three years ago. Dr. B has been a life-saver. I'd be happy to help you figure out a trip to LA to see him, if you plan to come out this way! Delta flies non-stop from DTW.

Message me, if you are thinking about seeing Dr. Buchfuhrer!

Laurachrissy · Post by **Laurachrissy** » Sun Oct 23, 2011 2:51 pm

http://www.youtube.com/watch?v=q_rdGX8mqGM

PENN STATE (in this video the doctor speaks of their clinic...some of the evaluations they perform- perhaps free in certain instances).

pamndorr · Post by **pamndorr** » Sun Oct 23, 2011 4:32 pm

Wow...thanks for all the input and suggestions. I am still not sure where I will go. For now I told my dr. that I was going to go see the neurophychologist first and see what he has to say. My appt. there is Nov. 17th. Not sure what all they are going to do..but they told me to plan on being there for about 7 hours.

This way it also gives me a chance to do my research on all the suggestions. I want to go to the place that can help me the most. I really only want to do this once. I am also trying to decide if I want to take part in any of the research that is going on at a couple different places. The one at John Hopkins right now sounds like me...but do I really want to go off all my drugs for 6 weeks...kinda scary...but also if it would maybe help others down the road I feel like I should do it. Can you tell I dont make decisons very easily....kinda wishy washy these day.

Julee thanks for the offer to help out in CA. That is so nice of you...are you sure you are from MI. LOL. I will let you know.

Have a wonderful Sunday everybody...it is beautiful here today. Sunny and we may hit 60...not bad for the end of Oct. in MI.
Pam

Post by **Chipmunk** » Mon Oct 24, 2011 2:47 am

D4 wrote:Dr. Silber diagnosed me with an additional sleep disorder which is much more debilitating than WED and PLMD. It is so rare my local neurologist was unfamiliar with it. This other disorder is the reason why I'm so messed up.

My body is super sensitive to medicines. Most doctors ignore me on that, but Dr. Silber understands and prescribes accordingly. The only drugs for that disorder just treat the symptoms and my body can't tolerate any of them.

I feel fortunate to have him as my doctor. Good luck in whatever you decide.

If you wouldn't mind sharing, what is your other sleep disorder? I am also super sensitive to medications and have other sleep issues besides WED but my sleep doctor sort of glossed over them to focus on the WED.

pamndorr · Post by **pamndorr** » Mon Oct 24, 2011 11:03 am

Ok now I am getting kind of curious. Do a lot of us with WED also have problems with medications. I was beginning to think it was only me. Now I see that there are a few others.

Kind of makes treating us a bit harder for the doctors. I see frustration on my doctors faces at times when I tell them that I can't tolerate a new medication.

Thanks

Post by **Polar Bear** » Mon Oct 24, 2011 12:45 pm

I have on occasions had a 'confrontation' with my GP where he wanted me to try a drug and I have said it was on the list of 'not rls friendly'. I insisted that if he had rls he would not take the risk. (The drugs in question being citalopram and amytriptyline).

For several years I struggled on, however during the last year he convinced me to at least try these two drugs of the 'not good for rls' list.
We agreed beforehand a plan of action immediately I felt any negative impact. And to be honest I gained the benefit of these drugs and no adverse affect on my rls.

Post by **ViewsAskew** » Wed Oct 26, 2011 4:40 am

pamndorr wrote:Ok now I am getting kind of curious. Do a lot of us with WED also have problems with medications. I was beginning to think it was only me. Now I see that there are a few others.

Kind of makes treating us a bit harder for the doctors. I see frustration on my doctors faces at times when I tell them that I can't tolerate a new medication.

Thanks

I definitely do not respond similarly to others. Dr B has gotten used to having NO clue how I will respond to anything.

pamndorr · Post by **pamndorr** » Wed Oct 26, 2011 10:51 am

I'm not sure what this says about me...but just knowing that I am not alone when it comes to bad reactions to the medications somehow makes me feel better. Maybe a case of misery loves company.lol

About the only thing I know to even say to the doctors and anybody else about all these medicine changes and adverse reactions is to walk in my shoes for just one week...then see if you still look at me like I am a crazy woman. Although sometimes from lack of sleep and impulse control issues right now I do sometimes feel kind of crazy.

I just keep telling myself that life is good even if it doesnt always feel good.

Restless Legs Syndrome (RLS) Discussion Board

Have to go to one of the specialty clinics...but which one?

Have to go to one of the specialty clinics...but which one?

PENN STATE has a RLS CLINIC