Neupro Patch

[pamndorr]

Jakesmom...just be careful mixing meds if you are alone and watch your dog. I know if I am having a real bad night and I start to cry too much or act any different two of my dogs will get up and follow me everywhere...I know they sense when something is not quite right.
You are about the same age as I was when the WED went wild. It was a gradual build-up to that. It just continued to get worse over the years...not that you are going to get worse...but I know how it feels to be in your 40s and feel like you are 80. I am in my 50s now and I feel like my body is reaching 100 at times. None of this can be good on our bodies and minds.
As for your mom...I am kind of the opposite of you..my mom is willing and wanting to help all the time. She has watched this happen over the last 3 years and I wish she didn't know how I feel...I wish she would blame my weight...but she just cries along with me...which makes even harder on me...she is not in the best of health herself. Maybe you could share some WED info fliers or anykind of information you can get her to read and try and understand..I just grabbed a bunch of the infor from the sleep doctors office and gave it to those closest to me hoping they would understand me better.
Good luck with the ct scan..I hope they can find some answers for you.
Happy Valentine's Day!!!

[rthom]

The RLS foundation provides print-outs with information as well to help folks understand WED, if you want them and cannot fid them let me know and I'll take a look for you.

A good point about the dogs, mine alerted me earlier and I don't know why but have been up all night (except 3 min earlier) with chest pain. The only other time she ha done this was at the dentist she always does it when the medication makes my heart race... hmmnm

I cannot wait till the sun comes up--it's 6:30 and should be soon. Hopefuly it will settle my emotions down (I've been pised all night for no apparent reason--I hate that)

[pamndorr]

rthom....I hate that feeling too. I figure I am just mad at the world during those times. I try not to do the why me thing...but I do feel that way. Why me..why did this happen to me. Why did I have to get the severe kind...and in my case why did I get these funky feelings that are totally different then most WED sufferers. I think that is why none of my doctors take me seriously...all but 2 of them have made the comment to me that they had never heard of WED acting the way it does with me.
But in the research that I have found WED can present itself in a number of ways in a number of body parts...mine happens to be mostly in my ankles and now in one arm.
I am up every night and can't wait for the sun to come up. I usually do the Facebook thing and play games and I have been trying to teach myself to crochet....I really am not good at it but it keeps my mind busy and that is what I need to do...downside to Facebook at night and no sleep....I tend to say things to certain pig headed people on there.....good thing they are my friends and it is just a case of not agreeing on things going on in the world. If I were sleeping when everybody else was I wouldn't do that....too much!!
Have a better day....Happy Valentines Day...

[badnights]

That part a few posts ago about wishing your doctors would read the whole chart and not just the most recent stuff - would see entries about the pleasant, cheerful Pam from 3 years ago, not hte overweight, complaining Pam from now - I can't copy and paste on this tablet... so I am paraphrasing - that is so true! That just makes me ache.

I think they forget, seeing patient after patient,, I think they get imagination overload after seeing so many complaining people. My doctor is quite good. It's of great benefit to see the same doctor over time, if sh'e good that is, and not to have someone who throws up hands in despair and says "I don't know what to do with you".

[jakesmom]

At what point do you give up the battle and find a new doctor? I am still in shock that my neuro has me on 2 meds that counteract blood pressure medication, she knows I have a monitor implanted in my chest for unexplained syncope, and she STILL wants me to ignore my cardiac symptoms and give the new meds 2 weeks to start working. My cardiologist would have a cow. But, I ask the opinion of those who have been there. Would you ride it out or look for a new neurologist.?

[pamndorr]

This is just me...but I think you have to look for a doctor that you are comfortable with and that you trust to take care of you. If you don't have that bond with the doctor then life with WED is going to be hell.

I had 2 good doctors over the years...it just happend that in the last 4 years I lost them both. One because he went into emergency medicne...he was tired of fighting the insurance co all the time. The other one was my sleep doctor and he came down with cancer and his famiy wanted him to retire and spend the time he had left with them...can't say that I blame them or him. I think that if these two doctors were still in my life I would be a lot better by now.

I keep track of my own health care. I have a journal that I write in about the WED. I wanted to keep a log of everything for my son and his children. We know my son aleady had PLMD and he only 32...and it gets worse each year. The other thing I do and have done for the last 4 years is I have a calander and I write down on there the drugs I take each day, the pains I have and how much sleep I get each night. I have found that helpful...it easy to carry a calander into your appts with you...the hard part is getting the doctor to look at it....the ones I have now do not..but I still take it with me each visit.

So to answer your question about when to start looking....I don't think you should ever quit looking for a doctor until you find one that you are comfortable with and you know is going to help you...I know they are out ther they are just hard to find.

I hope all that helps you out some. If I were you and I had cardiac problems too..I would be calling my cardiologist and talking to him about the drugs that you are on now and see what he has to say. Remember this is your journey and only you know how you truly feel each day/night and I believe you have to have doctors that you trust or it is a very long hard road. I am stil on the search and if I don't find somebody in this area soon then my plans are an apptl with Doctor B and see what he has to say...not exactly looking forward to that long plane trip to see him but I will if I have to...hopefully i wont have to.

Have a good day...

[ViewsAskew]

At what point do you give up the battle and find a new doctor? I am still in shock that my neuro has me on 2 meds that counteract blood pressure medication, she knows I have a monitor implanted in my chest for unexplained syncope, and she STILL wants me to ignore my cardiac symptoms and give the new meds 2 weeks to start working. My cardiologist would have a cow. But, I ask the opinion of those who have been there. Would you ride it out or look for a new neurologist.?

The following will give you my answer - I've seen 13 or 14 doctors so far.

I'm not endangering myself because the doctor doesn't get it. For me, this means continuing to try to find someone or flying to CA and seeing Dr Buchfuhrer. I've been to him before and he's great, but I keep thinking I can get someone at home. So far, no luck. I might try again, I might not. If I didn't have the ability to see him, I'd keep trying here no matter what.

[pamndorr]

Hi ViewsAskew...I am so glad you put that you had been to see Dr. B. I really am thinking that I will end up out there soon. I am going to try one more sleep doctor and one more primary doctor in this area and then that's it for me. I am tired of trying to convince some *******%$%^$^#^& doctor that this is not in my head it is a for real feeling and it doesn't feel good.
My question is after you see him does he continue to give care even if you are not in that area? Does he communicate with your primary back at home to help the primary follow your care? When you go out there does he rerun tests that have been done already or does he go by what is sent to him from other doctors? And where do you stay and is it complicated to get around out there.
Anyother info about it would be so appreciated....I am trying to figure out what to do next.
Thank you...BTW...you live in one of my favorite places to visit...I love Chicago!!

[ViewsAskew]

Hi pamndorr,

Several of us have seen him and traveled. He will do two things. He will continue to work with you through email to get things worked out. His office sends scripts via FedEx - he doesn't use the regular mail - or will call in certain drugs. Or he will work with your regular doctor to help them. He requires one physical visit annually to continue prescribing drugs. I found it worked better than with any doctor here!

[jakesmom]

I found a post on this site that lists doctors who understand this disease. When I pulled him up in our insurance, it lists his specialty as Psychiatry.

My first question is: does anyone else have a Psychiatrist who treats their WED?
My second question is: is that a normal occurrence? Psychiatry and WED?

Is it too much to ask to be taken off DA's? I am tired of hearing "lose weight." I don't need anyone to tell me that. I know how to eat right; but its dang near impossible to do when you have ZERO impulse control. I used to be disciplined, now; I see or I think about it and I buy it. I can't help it. Maybe a psychiatrist is what I need. He would probably understand the encyclopedia of symptoms sleep deprivation can cause, cognitive memory loss, impulse control etc.

I know what my Cardiologist is going to say. He is going to tell me to get off the medications causing conflict and lost weight. I would love to drop the weight Mirapex has caused me to gain.

I know I'm rambling and I'm sorry.

[rthom]

Also it's hard to be up all night hungry and not eat or drink anything

[jakesmom]

I guess I am one of the lucky ones. I can usually get 4-5 hours of sleep, but I am usually up at least 3 times to visit the ladies room. Being able to sleep in would be bliss, but my legs don't see it that way.

[rthom]

Even getting 4-5 hrs means you go for like 6 plus hrs between meals--would make me think my throat has been cut--lol

[rthom]

Still I don't think people think about that when dispensing advice about food

[ViewsAskew]

A few people have found a psychiatrist helpful.

I've long believed that it's not the designation that counts (sleep doctor, neuro, whatever) but their attitude. If they think they know it all, you're in trouble. This disease is variable and many of us seem to have weird reactions to meds. A good doctor is one who listens to you, believes you, and takes into account what you need.

I might be suspect of a list of doctors who say they treat RLS/WED. In my limited experience, these lists are never correct. To date, I've contacted over 40 local doctors who have been on one list of another - all say they specialize in WED. When I contact them, they really don't. They can treat mild/moderate cases, but a difficult one? They have each turned me away and told me to go to Mayo Clinic or listed a colleague. When I contact the colleague, he/she says it's out of their experience.

Before I'd go to anyone, I'd talk to the doctor's nurse and see what he or she says. Does the doctor treat difficult cases like yours? Will the doctor precsribe opioids if they other classes do not work? How much experience with augmentation? Etc.

Several people here have said they've had the best luck with very young doctors. If you can't see a Dr Buchfuhrer, Dr Walters, Dr Becker (etc - the people who research and write about it), seeing a very young doctor can help. They are too young to believe they know it all and are often keen to learn more and are excited by a difficult case.