Finally, no more pramipexole !!!!

[ViewsAskew]

His questionnaire is probably all you need, but it might be helpful to identify the 2 or 3 things that you really want to get out of this.

Maybe something like:
1. Review current medicine and suggest changes to something that is more effective
2. Determine how to work together between visits (you and doc)
3. Identify a game plan for the next 3 to 6 months

My mom has very mild WED - but once she's asleep, she sleeps very soundly. Many a time on vacation I've watched her sleeping - I have the light on, maybe music playing or the TV on - as if it were quiet and dark. I get being envious of that!

[onestrapaway]

Views,

His 11 page questionaire is my plan. He asked every conceivable question. What worked/didn't work? How much/how often. I scored a 16 on the Eppworth Sleepiness Test. I answered the miriad of questions. It kind of speaks for itself when my mom had to drive me to my appointment because I doze at the wheel.

I am hopeful. Since I found his name here, at least one person thinks he gets it. I will be crushed if he doesn't see my meds and make changes, but I am hopefull he will understand and be willing to help me.

Mom is in the bed beside mine sleeping like a baby. I know it's wrong to be envious of your mom, but right now, guilty as charged.

I pray tonight will fly by for you and tomorrow gets here quickly. I know how you feel when you're excited to see a new doctor. Since you found him here and another member recommended him, let's keep hoping everything will work out for you.

I wish doctors would understand that we are not trying to accuse them of not knowing what they are doing. They can't possibly know everything about every disease out there. We live with WED everyday of our lives and it makes a dramatic impact on us so naturally we are going to immerse ourselves into learning everything we can about the disease and treatment options. It's our life! Our well-being at stake! This is what I plan on telling the specialist when I get to that point. Hoping that he will understand my passion and not mistake it for drug seeking or trying to do his job or any of those crazy things we have all likely been accused of.

I can't wait to hear how your appointment goes. I pray you won't be disappointed.........

[onestrapaway]

His questionnaire is probably all you need, but it might be helpful to identify the 2 or 3 things that you really want to get out of this.

Maybe something like:
1. Review current medicine and suggest changes to something that is more effective
2. Determine how to work together between visits (you and doc)
3. Identify a game plan for the next 3 to 6 months

That's great advice. If you don't mind, I would like to use this for when I see the specialist. I am making a notebook for the doctor and I will highlight information that pertains to my symptoms, etc in order to make it a quick read, however, he will b e able to take the information with him if he's interested in reading more in depth. Once I get the actual appointment scheduled, I was thinking about e-mailing Dr. B. to introduce myself and ask him if he will be a contact for my doctor if the need should arise.

I wouldn't be able to do any of this if it wasn't for the excellent advice I have gotten from this board and website. I applaud all of you, especially the admins. and mods. for your selfless hard work. You really are making a difference!

[ViewsAskew]

Glad what I wrote was helpful. It always helps me to have a goal in mind when I go and to share that with the doctor. I might want to learn more about something, to stop a drug, to explore options.

[jakesmom]

Views,

My lovely mother is still sleeping like a baby. She was up once to potty; then back to sleep.

My goals are 2-fold.
1. Verify I am augmenting and get off pramipexole.
2. Ask how to regain my ability to get rejuvenating sleep thus regaining my quality of life.

Thank you, everyone, for your support, advice, opinions and your prayers.

I will definitely let you know how today goes.

Here is to hoping I report back with tears of joy.

[jakesmom]

New doc wasn't what I hoped. He said what I needed was beyond his scope and I should go to a Mayo Clinic in Minnesota or Arizona. Said if I wanted off my medications I needed to go back to the do that prescribed them and her take me off. My mother is suggesting I quit my job.

I give up!!!!!!!!!

[badnights]

Aw god! don't give up, love! (What would jake say?) We've many of us had to endure the same thing, hang in there because it does end! You will find someone ! Most of us do, and those who don't are managing creatively in other ways. So, take a bit of time to swallow your disappointment and then plan your next moves.

eg. Call his office back and ask for a referral to the Mayo clinic!! It is not correct that you need to be taken off meds by the prescribing doctor. He was simply out of his depth. So continue your search for someone with depth: someone with experience treating daily RLS/WED with severe augmentation.

About your job, you probably shouldn't be trying to function right now; if you have any options for taking leave, that might be wise to take leave. I woudn't hasten to quit, however, because WHEN your augmentation is over and your RLS/WED is being treated properly, you will be functional again.

And don't forget - you need to get off the Sinemet as badly as you need to get off the Mirapex

[Polar Bear]

jakesmom - I echo badnights post, you will eventually find someone to help, and please don't give up your job especially in the present economy.... is sick leave a possibility? At present you are feeling overwhelmed and barely know which way to turn. Does the suggestion of a referral to a Mayo Clinic sound a possibility?

[ViewsAskew]

Suggestion - this may not work, but could be worth a try.

Ask him if he'd work with a specialist, say Dr Buchfuhrer. If he would, you might be able to be treated by him with phone consults to Dr B.

So sorry it didn't work out. This is one of the worst feelings, I think. We get SO sure that someone will help us and then they aren't what we need. After having this happen several times, you think I'd be used to it, but it still hurts when it happens! That feeling that nothing is EVER going to be OK again.

I'm glad your mom was there with you.

[debbluebird]

Besides you will loose your health insurance if you quit and only have COBRA which is expensive. I'd try to take a leave.

[jakesmom]

Well, I have a plan. I don't know if its a good plan, but it's all I've got. Before I begin, no, I don't think he would listen to another doctor. He basically told me my neuro had tried all the drugs out there, and what did I want him to give me? I felt like a drug seeking junkie. Also told me that he didn't think what was going on with my arms was augmentation; he thinks its is a lack of blood flow and poor circulation. He even said he didn't know that I had RLS. His best advice was that I should never have been given the amount of drugs I am on and it would have been best if I had never taken them. I was so flabbergasted, my mom started asking questions. He said one doctor couldn't treat me, it would take a team. Neurologist, Pulmonologist, Psychiatrist, sleep specialist and Cardiologist and a miriad of tests because he said I had a lot going on. He said I didn't need a referral to Mayo Clinic, but he would write one if it would help for insurance purposes.

Let me start with I live in Arkansas and an inpatient stay in Minnesota isn't affordable, let alone practical. I called drug treatment centers. They can help me with klonopin and Ambien, but they said I shouldn't have any withdrawls from Mirapex. I told the nurse that would be the worst of the 3. No one in the vicinity is equipt to help me. I don't know about Dallas or OKC, but, again it's a cost issue.

My mother thinks I will likely lose my job before this is over. I refuse to give up my independence.

My plan is to cut all pain, sleep and WED medications in half. Once I get used to that I will start with the easiest and slowly wean off it. Then move on to the next easiest and so forth. Maybe that way I can wean myself off without too much stress on my body. I know the hard 2 will be klonopin and Mirapex. The easiest will be Sinemet and tizanidine.

I know that's not the ideal solution, but it's all I got.

I welcome all suggestions. Taking time off isn't an option but it is an emergency back up plan.

[ViewsAskew]

I wouldn't do anything until you send an email to Dr B and see what he says.

The doctor you saw today has a valid point when he says he's not sure it's WED. Make sure of that first. Before all of this happened, do you feel it was plain-ole vanilla WED - you had a strong urge to move a body part and it often was associated with an icky feeling - painful, pulling, electrical, buzzing? The sensation and need to move happened when at rest, and when you did move - walk, exercise, dance, yoga etc. it got better.

If that is true, then you likely have WED. You may also have something else, too, but one thing at a time.

[jakesmom]

Views,

Yes, I am certain it is WED. I remember seeing the first Mirapex commercial and thinking "that's me they are talking about."

I don't know what tests they would run. I don't have a clue what to ask or say to Dr. B. or know how he can help me. I am numb at the scope of my "addiction" and the lack of ability to treat it. I am not a little scared.

[debbluebird]

I don't think that Doctor had a clue. When I was taking way too much Mirapex I had WED in my arms and I was augmenting. That stopped once I got off if it I was in the same situation, with way too many drugs in me. Didn't the neurologist check you out regarding your arms, etc. ? Maybe a good sleep doctor in your area would help.

[jakesmom]

Does anyone have any idea why doctors are so quick to put you on a medication and so reluctant to take you off it??

When I become President rehab clinics will be well versed on dopamine agonist withdraw and they will help the frantic and terrified.

I am finally conceding: I am depressed.