Sick of this disease

brandy · Post by **brandy** » Mon Jul 10, 2006 2:08 pm

Warning! - long update on my visit ahead.I just got back from the specialist and, as predicted by some veterans, I am a bit disappointed. The doctor apparently knew about RLS, but had never seen anyone with augmentation from Requip. He put me on Mirapex. I asked if there wasn’t a chance that the Mirapex couldn’t cause the same problems as the Requip, and he said there was a chance, but that we’d do it this way, anyway. He offered no help in the short term and said he’d see me back in 5 weeks. When I realized that the visit was wrapping up, I spoke honestly about my need for a decent night’s sleep. He said he could prescribe something to help me, but felt like it might keep me from determining if the Mirapex was helping or not, so I needed to just hang in there for the next several weeks. He said I could increase the dosage faster than recommended, but I would probably be sick as a result. I’m so tired and sad. I haven’t yet decided what to do, but feel pretty sure that my insurance won’t cover another specialist until I try what this guy recommends. Also, my family doctor did the referral to this guy, so I don’t think she would be willing to override him. I took in an e-mail I received from Dr. B., but this doctor told me to put it away, so I didn’t even get to talk to him about what Dr. B. said about something to help you through the first month of withdrawal. Any thoughts on what I should do now?

Post by **ViewsAskew** » Mon Jul 10, 2006 3:55 pm

Cry. Be frustrated. Then get mad. I find the only time I can really take care of myself is when I am mad at the indiginity of my situation.

It doesn't sound like you have too many options, unfortunately. This sounds exactly like what the "specialist" I waited five months to see did to me.

You can try is to go to a new PCP. You can try calling their nurses and talk to them and ask how helpful they would be in this situation. You can try a referral from a friend to a PCP that would be more helpful if yours isn't. That's really how I found my current doc. He was my doc years ago, but I'd moved. My sister urged me to see him - she was sure he'd listen and help. I hadn't known him that well, but she and her kids still went there and believed he would help. Interesting, his wife and son are both there and I don't know for sure that either of them would have. They are more tradional. He had a real knack for reading patients.

I am so sorry, Brandy. I wish you weren't going through this.

One other option. . .how well do you know your PCP? I faxed mine the letter from Dr B - she called me and agreed that the treatment should be done, but she wasn't comfortable overseeing it. That's why I went to see the four specialists over a seven month period. Not one of them would listen to his advice and all wanted me to stay on the DAs. One of them even agreed that the DAs were the cause of all my problems, but still wouldn't help me get off of the Mirapex. I didn't know that the horrible period would stop, so each time I tried and it got so bad, I'd eventually start again. If I had known an end was in sight, I might have stuck it out. Still, I give you so much credit - I know how hard it is to be where you are.

It's possible that if you call your PCP and explain it, or go in for an emergency appointment, that this will do the trick. Mine really did understand and wanted me to get the drugs to help, but just wasn't comfortable being responsible for monitoring it. Maybe yours will be. I hope so.

You and Em will be in my thoughts today.

ksxroads · Post by **ksxroads** » Mon Jul 10, 2006 4:41 pm

Dear Brandy,

The *specialist* I saw was similar in his reaction to *listening* or working with me as an individual case ... I was glad to see later when they did a revision of the drs specializing in RLS that his name was removed from the list of drs ...

Read carefully Ann's suggestions. Talk with your GP... show her Dr. B's response. After going to several drs and specialists, I too went to a former dr a gyno who I had a good relationship with many years back. He too was unable to take me on as a patient but did give me the names of two doctors he felt would be willing to listen and should be helpful. He was right. This GP readily admitted he knew little about RLS. He was willing to listento me, educate himself and to look over the information I provided. He even contacted Dr B himself.

There is hope and we are all rowing madly stirring up the Hope we know you need. We are all here for you, it may take a little more time, yet I know that you are going in the right direction.

Hazey

becat · Post by **becat** » Mon Jul 10, 2006 6:47 pm

Hi everyone,
Yes, I think this is the most common song that we all sing before we find that doc that will partner with us.
*specialist* is the right way to put it Hazel.....I swear this is not always easy to treat, but I think there are two problems here with most docs.
1. DEA and the war on drugs and yes, I've had more than one doc tell me that it is true.....they don't want to be flagged or threatened for writing scripts for meds that the DEA thinks are their business.
2. EGO. Plain and simple, they don't want to be told that someone else knows their job better. Your letter from Dr. B. probably insulted him. Dorkwad.
Just know Brandy that you have Ann, Hazel, myself, and a few others that have had success. We're not just counting on wishes that the rest of us RLSers get what we've found. We all want the same thing for each of us.
Like Jan and Rubyslippers, or Penguin, finding the right doc that will partner with you, listen, care and do a job that is worthy of you, is a must.
I love this board, these people, I just know that in the end we will win this battle.
Hang in there
and remember the moon.
Lynne

brandy · Post by **brandy** » Tue Jul 11, 2006 3:52 pm

Thanks so much for your support. Additionally difficulty in that the way the doctor prescribed me the Mirapex is very expensive. He said I could up my dose as fast as a I like, but will likely experience severe side effects. If I get a month's suppy in this highes dose, it is around $85. If I get a months supply in the lowest dose (which means more pills) it is around $240. Luckily my husband was with me and refused to allow me just to start off at the highest dose and spend my nights ill. What I did instead was a got a week of the smaller pills, will titrate up over the course of a week and then go back and get a month's supply of the dose that I am ultimately supposed to reach. I feel frustrated and guilty that the drugs I am on are so expensive. Also, guilty that this is taken up so much of my thoughts and seems to be the only thing I can talk about with my husband, who I haven't seen a lot lately. And guilty that I can't seem to make myself get over this and go back to being me. Thanks for your support and understanding, ladies! I am a bit better today, but only because I took a sleeping pill last night, regardless of what the doctor said about hanging in there to see if the meds might work. He won't see me again for 5 weeks, so there is plenty of time for that. Also, if he really understood, he would know that my daytime symptoms would subside if the meds were working. I hate feeling so cranky and frustrated. I just don't feel like myself. I don't even want to be around me! I might completely go nuts without your support. My favorite thing about this site - there is someone out there supporting me who called my doctor a "dorkwad." My thoughts exactly (well, the closest you can get to my thoughts without using inappropriate lanugage. Only another person who has walked in my shoes would do that. I feel like I should be stronger and should not have to lean so heavily on others, but then I remind myself that I did something very difficult by getting off my meds for 2 weeks all by myself. So, that doctor didn't want to help me in the shortrun? Maybe the Mirapex is the right answer for the long run. And in the meantime, I have you guys, a loving husband, a supportive boss - I am blessed. One last thing, any way to let the folks that run the website know that I went to this doc and he was unhelpful and not nice? The problem is that he seems to have seen a fair number of folks with initial RLS and has been helpful. He just didn't know what to do with me.

brandy · Post by **brandy** » Tue Jul 11, 2006 3:55 pm

On a lighter note, as I was leaving my *@#$ doctor's appointment, someone mentioned that I might want to check my car because there was a car on fire in the parking garage. Who should be parked directly next to the car on fire? Why me, of course! I almost laughed at the fact that piled on top of the bad day, I come out to find firepersons and policepersons surrounding my vehicle. I had half a mind to ask one of the police to come back with me into the doctor and threaten him with arrest if he didn't help me more! No damage to my car, but it did give me a chance to laugh at my seeming streak of bad luck in an otherwise awful morning.

becat · Post by **becat** » Tue Jul 11, 2006 4:30 pm

That is a great story. I would have just looked up and asked God, "are you kidding me?" and then LOL my catooter off.
And let's face it Brandy......nothing better than a man in uniform!

The cop would not have arrested him, but I would have asked for the gun maybe,.......no, too much paper work in that.
I'm glad your car was ok.
I send you a bucket of water, just in case, and all warm wishes.
Hugs the the moon.
Lynne

brandy · Post by **brandy** » Tue Jul 11, 2006 4:53 pm

Now that you mention it, one of the firemen was kind of cute! Although, I think there is no one who would be willing to chase after me as I paced the floors every night and my husband has learned to sleep through anything, but I guess I could have enjoyed the view a little more! I was little preoccupied. Thanks for the bucket of water. Does it come with someone to actually use the water (and maybe some soap) on my car? I send a tall dark handsome man in uniform to admire back.

brandy · Post by **brandy** » Wed Jul 12, 2006 6:00 pm

Where would I be without you guys. Calling on all of the bravery that I have encountered on this site, I called my PCP and told her I was unhappy with my neuro appt. She had another neuro in mind, but he was not on my insurance. So, I am going in in about an hour, with all of my research in hand, to talk to my PCP about what is going on and we will think together about what to do next. I think I would have been just about hopeless and might have given up all together without your advice and encouragement. I'll let you know what happens. Thanks so much, everyone! Ah, the roller coaster of RLS. Valleys and Mountains to beat the band!

Post by **ViewsAskew** » Wed Jul 12, 2006 6:08 pm

It is bravery, isn't it? I don't think we fully realize how deep our belief is that we shouldn't question authority. Nor how hard it is to really do it.

When we have to stand up and say, "No. This isn't what is working for me. I need you to help me in this way," it is the ultimate in bravery for ourselves.

Gosh, have I learned a lot about how to take care of myself from this experience. How to stand tall and not apologize. And how to be honest and truthful, to be authentic to my core. I actually notice a difference in my other relationships because of it. I have less difficulty with my clients in holding my ground and standing up for what I need.

It sounds like a great sign, Brandy. I hope your PCP has as much courage as you, to follow through and be with you to get the treatment you both need and deserve.

becat · Post by **becat** » Wed Jul 12, 2006 6:16 pm

Bravo Brandy.....You go get it girl!
Ann, you couldn't be more right. Maybe what I've learned here is what is helping me on the other fronts in my life. We teach people how to treat us, by how we handle that in which they offer or how they offer it.
You hit it right on the spot.
Both of you.
Love this board.
Lynne

Rubyslipper · Post by **Rubyslipper** » Thu Jul 13, 2006 2:12 am

Bravery, strength, determination, being gutsy and even sometimes rude. We all get there sooner or later in this fight. Brandy, keep trying and I hope this time it works for you. We have all been there too many times; doctors who ignore what we say, belittle us or the info we bring, deny that we know what we are talking about. But if we hang in there, keep insisting on the RIGHT to be heard and treated, eventually we cme to a doctor who will work with us. We truly have made great strides in the past two years. The Foundation is working very hard for us. Their ultimate goal is to be put out of business because a cure has been found someday. That's the truth. We have to do our part and most of us are. There are so many truly wonderful people on this board that dedicate so much of theri time in helping others. I know there are lots of people who read these discussions and may never write a word. But they can still take the info and use it. I am so proud of everyone I know on this board becasue they care so deeply about passing on information and support. Brandy, just hang in there and know that we are all pulling for you.

FidgetBoy · Post by **FidgetBoy** » Thu Jul 13, 2006 3:24 am

Brandy-Sorry your visit to your "specialist" was soooo similar to mine when I got the same stupid lecture! "Take these pills and then suffer for the next 5 weeks and then we'll make you try some other stuff and keep giving you things that make you worse and withholding things that make you feel better until you crawl back to your PCP and beg for mercy". I am rarely violent but when I had the "rebound blues" I really wanted God to give all my doctors the WORST cases of RLS in history. :twisted:

The good news is that my PCP was phenominal once I told him how much worse I was. I absolutely agree that what this comes down to is humane and ethical treatment, period. And the more of us that tell our stories, push the envelope and challenge the system- the closer we'll be to eliminating the scenario you just went through.
Josh (who keeps dreaming of creating RLS "bouncers" who go to your appt with you and kick a** when needed)

becat · Post by **becat** » Thu Jul 13, 2006 3:27 am

Hi Josh,
You know Jumpyowl use to tell us to remind docs about the oath they took "to cause no harm", kinda thing. I love it that you said that, just reminds me how much I miss him and how he taught us all deal with these mean docs that think 5 weeks is ok to go without sleep or relief.
Great post.
I'm with you.
Still bursting with pride for you Brandy.
Hugs
Lynne

brandy · Post by **brandy** » Thu Jul 13, 2006 2:09 pm

It really blows my mind that so many people care what happens to me, but here is an update anyway. My PCP is amazing. She looked at all the research I had done, we talked about my options, and I have an appointment with another doctor on July 27th. The problem is that my doctor is a PA rather than an MD and cannot write a lot of the prescriptions that are appropriate for RLS. However, she said this other doctor would be willing to work with me, so it's another 2 week wait. Cancelled my follow-up with the jerk doctor and will not go back to him at all. Will continue on the Mirapex and my doc wrote a script for Ultram yesterday to help with the symptoms and, surprisingly, there was some relief. I won't use it during the day, but a few hours of relief in the evening is straight from heaven. Thank you so much for your concern and support. I keep asking God what I've done to have found you all. I think it's a little thing called "Grace."