My doc will no longer be my doc . . .

[cmoore1958]

Well, my doctor appointment to discuss my rls getting worse and my falling asleep all the time was not as I had hoped it would be.

I was having a full blown rls attack just as my doc entered the room. I told him and he said to keep standing, walking or whatever I needed to do to be comfortable. We reviewed my neck issues first and the PT effects on it. Next he upped my dosage of Lyrica to the 400 mg recommended for fibromyalgia. Then it was down to business.

I took my diary with me to the appointment, but did not have an opportunity to pull it out and discuss it. I started by telling him that I am not sleeping at all and know this is the reason for my falling asleep at the most inopportune times. He agreed saying that sleep or lack of it is a cumulative thing. All the nights add up on top of each other and eventually cause the sleep deprivation issues. He then asked me if my back hurts. I told him not that I'm aware of, but my hips bother me with my fibro. He said he wants to switch my PT from my neck to my back. Then told me that most rls is caused by back problems. Whoa! Wait a minute! Not what I had learned. I just said "really" having decided that I'd be getting a new doctor again.

Since the PT for my back included a massage I'm going to take a few sessions anyway with insurance paying the tab.

I engaged him in a discussion of Mirapex vs Requip vs other rls meds and augmentation. He kind of glossed over that comment when I said I knew I was augmenting on Mirapex. He told me that Requip is the same thing as Mirapex so he didn't see the need to switch, but would if that's what I wanted to do. He said he would also up my dosage of the Mirapex if I felt I needed to, because a person can go up as high as 3 mg safely -- I'm at .5 right now -- and augmenting for God's sake! He didn't seem to understand me when I spoke of augmenting. He just told me that he doesn't like to put "bandaids" on things my overmedicating, but, he'd rather find the cause of the current problem. And he feels the problem with my rls increasing is my lower back issues I had in the distant past.

Bottom line here's what I walked away with:
1. Increase fibro drug Lyrica to 400 mg from 300 mg
2. Switch my PT from my neck which is beter to my back which he things is causing my rls
3. Nothing to help me sleep at night
4. Nothing to help me stop augmenting
5. Nothing to address my current rls breakthroughs
6. Nothing, nothing, nothing -- a whole bunch of nothing to help me get through what I'm going through right now.
7. Time to find another doctor!

There are 4 doctors listed on rls.org as referrals in Houston I'm going to check into them tomorrow. If none of them are taking new patients I'm going to contact the support group leader in Houston metro area and find out what info she has on local doctors.

Here I go again . . . starting over . . . the only thing different this time is that I'm armed and ready and know more about rls and its treatments than most doctors.

Any insight and help any of ya'll can give me would be great!

Can someone give me Dr B's email address?

Hugs,
Cyndi

[Neco]

Hope you find a better doctor. Let us know

[ctravel12]

Oh Cyn I cannot believe what you went through. I know I had mentioned to you before that I thought you were augmenting on mirapex (am not a dr) and he wants to up the mirapex hellooooooooo.

Let me know what you find out tomorrow from the drs in the Houston area.

I will see you in the chat room tonight and hope that you are feeling better tonight. I know what it is like to augment and it is not a pretty picture. I am sure other members will post and give you some good sound advise.

[pedrime]

Ahhhhggg. You poor lady. I really feel for you. I hope you find a competent doc, and soon.

[Aiken]

Given the varieties of meds we take, I'd make sure to tell the lucky winner that you did have a guy previously and you have prescriptions for X, Y, Z from him. I wouldn't want a doctor to think I was "doctor shopping" in the drug-seeking sense instead of the best-buy sense.

[SquirmingSusan]

Hi Cyndi, you wanted Dr. B's email address? I think it's somno@earthlink.net. You can double check at his website, http://www.rlshelp.org.

I would like to be able to say that I'm stunned at how badly you were treated at your doctor, but sadly, it's all too common. I do hope you can find a doctor who isn't so totally useless! And soon.

[cmoore1958]

Susan - Thanks for Dr. B's email address. I emailed him last night and he replied within a couple of hours. He confirmed that I am in augmentation and outlined what needs to be done for me now and in the near future. The very first thing he said is that I need a new doctor. LOL

Zach, Char, Pedrime and Aiken - Thanks for your comments and concern. I know you have all been there and know what I'm going through right now.

UPDATE:

I started calling doctors today and found a neuro/sleep doctor who ONLY SEES PATIENTS FOR RLS! I interviewed him on the phone and asked him to give me the cause(s) of RLS, describe augmentation and treatments for it, and asked what he believed should be done for sleep deprivation. He got all answers right! He's Hired! I have an appointment with him on Friday morning. I'm excited and scared of what I'm about to go through getting off of the Mirapex, but know I have to do it.

I also emailed Dr. B last night. He responded really quick. The first thing he said was for me to get a new doctor. Then he confirmed the augmentation by my symptoms. He outlined what needs to be done for me now (2 weeks of hell as he put it) and what I need in the future. He confirmed everything I learned for ya'll on the board and then some. He is such a nice man to be so responsive to us rls-ers.

I'll let you know how the "new" doctor is on Friday. At this point I don't count any of my chickens before the eggs are hatched.

Thanks again,
Cyndi[/b]

[Neco]

Good luck

[becat]

Cyndi go gettem'. You have done everything by the book so far and I hope that new doc does right by you.

It may have served you well that the other docs were Full.

Please let us know.

Lynne

[dogeyed]

Cindi,
What IS good for sleep? You mentioned it in your last post.
GG

[ctravel12]

Oh Cyn I am so glad that you got some good answers from Dr B. Hang in there as I will be there with you (mentally and physically) and will give you lots of hugs to help you along the way.

Please let me know about the new dr and I will most likely be talking to Friday night. Did he say anything about weaning off of mirapex? You for sure do not want to go cold turkey. I have been down that road and it is not a nice one to be down.

I knew other members would give you some wonderful adivse. This is such a wonderful family and am so glad that you are part of it. They saved me many times and know they will save you too. You are in prayers everynight along with all of the rls family.

Take care my friend. Love you.

[Polar Bear]

Well done ... you hope you have a good new doc, and also a reply from Dr B. You will be able to approach your Friday appointment with optimism.

Betty

[ViewsAskew]

I wouldn't wish doctor difficulties on anyone....but am so happy that the information here helped to put you in a place where you knew what you needed and were empowered to get that.

[cmoore1958]

Hey dogeyed,

I have no idea what is good for sleep myself. Dr. B said that Ambien or Lunesta are very helpful for rls patients.

Do you also have trouble sleeping (as if most people with rls don't).

You can PM me if you want more information.

Cyndi

[lorabell]

Hey cy.
As we all know, ( at least us older rls'rs,) stress is a major factor and the cycle goes round and round. So stress, plus augmentation, is just a pain all the ay around.. The stress of your last dr. would send me over the edge and I am standing too close to it as it is. lol
I am so happy that you have found a new dr. I will be with you in spirit, unless of course I am sleeping , then your on your own. lol
hugs,
lorabell
aka
wowobl
And I still don;t have that spreadsheet figured out 1