Upcoming Appointments
Upcoming Appointments
It seems, not surprisingly, that quite a few of us have drs appts lined up (me Thurs, Em Fri, Dee, Mon). I was thinking we could put updates in this thread and if anyone else has an appointment scheduled they could let us know so that we can all send hugs and prayers and moons and positive energy and everything else we have to offer. We can also try to hold each other up until the appointments come (the waiting can be torture) and after they are over (doctor's visits and the lack of help can be torture, too). Anyway, Em and Dee, I'm thinking about you, praying for you and looking forward to a positive update.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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Penguinrocks
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Ridgerunner
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I have an appointment with my Neuro in Nov. and this is a 6mo. post after being stabalized on Methadone. I will just ask for an increase in pills from 45 to prolly 60 per month. I take 5mg at bedtime and 2.5mg as needed and I do not yet want to go up to 7.5 at bedtime but I want enough available for those nights when I need more.
I do not get too anxious with my appointments any more because I have known my doc for a couple of years and he is comfortable prescribing opiates to his patients when the dopamine agonists do not work. He difinetly doen not make us into some test subjects with regard to medications. Also, with Methadone I feel I have found a long-term solution that works great and I wish more Drs would give this to pts with RLS.
I do not get too anxious with my appointments any more because I have known my doc for a couple of years and he is comfortable prescribing opiates to his patients when the dopamine agonists do not work. He difinetly doen not make us into some test subjects with regard to medications. Also, with Methadone I feel I have found a long-term solution that works great and I wish more Drs would give this to pts with RLS.
Dee and others **************Fairy Dust too************* and some ***********Positive Energy**************** It really sparkles on you Dear Miss Penquin!
Ridgerunner, I am so glad to hear that you have a dr who is willing to work with you and others to manage their RLS in the best way suited to each individual. Not certain where you are located, it might be helpful if you have not all ready submitted his name to the RLS foundation list of doctors patients have found helpful.
My doctor has expressed that he is not ready to prescribe methadone in my case. Which to me doesn't make sense, especially since studies have shown it to be preferable to the Ultram and Hydrocodone I am prescribed. It would definitely decrease the amount of meds I take daily...
Look forward to updates from everyone! Hazel
Ridgerunner, I am so glad to hear that you have a dr who is willing to work with you and others to manage their RLS in the best way suited to each individual. Not certain where you are located, it might be helpful if you have not all ready submitted his name to the RLS foundation list of doctors patients have found helpful.
My doctor has expressed that he is not ready to prescribe methadone in my case. Which to me doesn't make sense, especially since studies have shown it to be preferable to the Ultram and Hydrocodone I am prescribed. It would definitely decrease the amount of meds I take daily...
Look forward to updates from everyone! Hazel
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden
Here's my update - first things first - the doctor was kind and good and actually listened! Do a little dance for Brandy! (Just add some arms with the leg moving going on right now) She was a bit confused about the foot/leg/low back pain and wants me to check out plantar fascitis and see if that sounds like what's going on with me. I will do that when I get a chance. She upped the Mirapex to 1 mg, renewed the Ultram prescription (which was helping) and made appointment for 3 weeks. Did you hear that, sports fans? She listened and will see me back in THREE WEEKS (not three months, not three years - three WEEKS). She also said I should call my insurance company and see if they cover acupuncture because it might help for insomnia in general and an overall sense of wellbeing. Any thoughts on this? I don't feel like I'm there yet, but I do feel like I have found someone who will help me get there. A little hope, that's all I needed. I still ache from the waist down, I'm still exhausted, I still don't feel like myself or that things are fixed, but there's a little more hope than there was when I woke up this morning.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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ViewsAskew
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I think it's fantastic! Great start. You must be on cloud 9 - except for the pain 
I'm doing the happy dance with you, while still holding on to positive thoughts for Em, Dee, Jan and others who are still waiting on appointments.
I have plantar fascitis, so if you want to know anything about it, let me know. I can't get up from any sitting for more than a few mintues without pain. It's gotten better over time - but nothing they tried helped
.
Acupunture can be wonderful. My sister and mom have both used it succeessfully for various things. I tried it for RLS and general wellbeing. My problem was that the relaxation CAUSED RLS while on the table with those needles in my legs. Yikes! It was horrible. My legs would start to twitch, the muscles would contract and those needles hurt when that happens! By my 5th treatment, I would stay hypervigilantly awake. By my 8th, I couldn't convince myself I wanted to go and be tortured! So, I stopped. If you can get it so it doesn't cause RLS and when you are not having RLS, it may be very helpful. But, just know that it may not work quite as intended
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I'm doing the happy dance with you, while still holding on to positive thoughts for Em, Dee, Jan and others who are still waiting on appointments.
I have plantar fascitis, so if you want to know anything about it, let me know. I can't get up from any sitting for more than a few mintues without pain. It's gotten better over time - but nothing they tried helped
.
Acupunture can be wonderful. My sister and mom have both used it succeessfully for various things. I tried it for RLS and general wellbeing. My problem was that the relaxation CAUSED RLS while on the table with those needles in my legs. Yikes! It was horrible. My legs would start to twitch, the muscles would contract and those needles hurt when that happens! By my 5th treatment, I would stay hypervigilantly awake. By my 8th, I couldn't convince myself I wanted to go and be tortured! So, I stopped. If you can get it so it doesn't cause RLS and when you are not having RLS, it may be very helpful. But, just know that it may not work quite as intended
.Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Great thread Ya'll.
Brandy Yahoo girl! Sounds awesome to hear that she listened, about the 3 weeks yahoo again! And I'm glad she is taking your pain seriouly.
Alright Dee, go gettem tomorrow! The moon will shine for you tonight, take it in , gather the strength we are all sending you and go for it hon.
Ridge I'm so glad to hear that your doing so well. Yahoo for you too. Nice to see you around a bit more often lately too.
Hazel, you , Ann, and Ridge are far braver than I. But I hope that that doc of yours follows your lead as you wish.
I've used acupunture for miagranes, but not anything esle. Works wonders during a headache, but have no idea what it would or will do for RLS.
Next appt for me, sometime in Sept.
Hugs to you all, this is nice.
Lynne
Brandy Yahoo girl! Sounds awesome to hear that she listened,
about the 3 weeks yahoo again! And I'm glad she is taking your pain seriouly.
Alright Dee, go gettem tomorrow! The moon will shine for you tonight, take it in , gather the strength we are all sending you and go for it hon.
Ridge I'm so glad to hear that your doing so well. Yahoo for you too. Nice to see you around a bit more often lately too.
Hazel, you , Ann, and Ridge are far braver than I. But I hope that that doc of yours follows your lead as you wish.
I've used acupunture for miagranes, but not anything esle. Works wonders during a headache, but have no idea what it would or will do for RLS.
Next appt for me, sometime in Sept.
Hugs to you all, this is nice.
Lynne
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ViewsAskew
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Lynne, why are we braver? Because of the methadone?
If so, for me it was really simple. Most of what we "know" about it is hype because it's used to treat heroin addicts. Ooooo, it's methadone (as if it were something nasty like turnips). But, it might as well be called "carrots." Yeah, it's still an opioid, but there seems to me to be quite a bit of evidence that it's the least problematic of them! They use it on addicts that they don't get addicted to it! There is no high. And it works--really, really well. I wish you would try it just ONE day. If you had the right dose, you'd never want to go back.
One of the women on the Yahoo board recently tried it and was amazed at how well it dealt with her RLS. She was in the position Brandy is now, except she'd already augmented on 3 DAs. She wrote that something was making her sick. She wanted to know if anyone else had gotten sick from it and what did they do, because she was NOT going to stop taking it. She said she hadn't felt like this in more years than she could remember.
Oh, and if we're braver than you for another reason and it's not methadone. . .sorry about all the above!
If so, for me it was really simple. Most of what we "know" about it is hype because it's used to treat heroin addicts. Ooooo, it's methadone (as if it were something nasty like turnips). But, it might as well be called "carrots." Yeah, it's still an opioid, but there seems to me to be quite a bit of evidence that it's the least problematic of them! They use it on addicts that they don't get addicted to it! There is no high. And it works--really, really well. I wish you would try it just ONE day. If you had the right dose, you'd never want to go back.
One of the women on the Yahoo board recently tried it and was amazed at how well it dealt with her RLS. She was in the position Brandy is now, except she'd already augmented on 3 DAs. She wrote that something was making her sick. She wanted to know if anyone else had gotten sick from it and what did they do, because she was NOT going to stop taking it. She said she hadn't felt like this in more years than she could remember.
Oh, and if we're braver than you for another reason and it's not methadone. . .sorry about all the above!
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
ok, i just got back from neurologist. I told him about the foot pain in the morning when I stood up and he told me it was just part of this RLS. He checked my reflexes, stuck me with the pins, and made sure my brain was functioning by telling him if he was pushing my toes up or down. He upped my pain med because he said it was wearing off early because my system was getting used to the dosage. The nurse told me something interesting that i didn't know, her husband has rls and she had read there is a nutrient in walnuts that helps people with rls. she has been buying him walnuts and he eats some everynight and he says it has helped his. i am not above trying anything at this point lol besides i like walnuts. so basically my rls is the same, just my system getting used to the pain med, and unfortunately the foot pain he said is just another crappy part of rls. sigh
ps. he did tell me the pain was not neuropothy.
dee
ps. he did tell me the pain was not neuropothy.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
So, I doubled my Mirapex dose last night (from .5 mg at dinner to 1 mg at bedtime per doctor's instruction). I slept very little because of some pretty tough nausea. The problem is that it is currently 9 AM and I have some heavy RLS symptoms in my right leg (which is always the worst). Could I be augmenting with this DA, too? Already? Should I call my doc? Maybe e-mail Dr. B.? Should I just keep trying with the 1 mg Mirapex? I have some Ultram, but don't want to take it at work. It can keep the symptoms under control if I need it, but I am feeling a little afraid that the Mirapex is not going to work either and the I'll have to move to something else. My doc doesn't have any RLS patients who have augmented on DAs. I know it is a last resort, but I wanted to understand about Methadone, so I asked my doc yesterday just to tell me about it and she said I better hope I never have to be on it because I am so young (27) and on methadone you just have to keep increasing your dose. I'm just feeling a little nervous overall and looking to my family for help. I know we are not doctors, but I would be glad for any advice that anyone might have.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Brandy- Ann posted something about this on another thread (and I'm sure she'll jump in again any minute.. 
) but in reality, RLS experts have found just the opposite with narcotic usage in RLS patients. We do NOT tend to need higher and higher doses of narcotics and once we get put on the correct dose, most of us can stay on that dose for quite some time. I'm also not sure why your doctor would withhold therapy that's beneficial for you just because you haven't hit some magical age? I'm 34 years old and have fully accepted that I may need narcotics for the rest of my life. BUT, new therapies are discovered every day so in the future- maybe not. The point is-physicians should use what is available today to ease the suffering of their patients-- and not worry about the age of their patients or societal stigmitization. I'm beginning to think that the one area where RLS patients/friends/family can have the most impact in this world is to literally take on the medical establishment's morbid fear of opioids. we deserve relief of suffering... we deserve a life of normalcy and we absolutely deserve a medical professional who takes on our RLS demons with the resolve to use what is necessary. Sorry if I'm being preachy this morning, everyone, I just want you to feel better, brandy, and your doctor's response to your methadone question is so.... weak.
) but in reality, RLS experts have found just the opposite with narcotic usage in RLS patients. We do NOT tend to need higher and higher doses of narcotics and once we get put on the correct dose, most of us can stay on that dose for quite some time. I'm also not sure why your doctor would withhold therapy that's beneficial for you just because you haven't hit some magical age? I'm 34 years old and have fully accepted that I may need narcotics for the rest of my life. BUT, new therapies are discovered every day so in the future- maybe not. The point is-physicians should use what is available today to ease the suffering of their patients-- and not worry about the age of their patients or societal stigmitization. I'm beginning to think that the one area where RLS patients/friends/family can have the most impact in this world is to literally take on the medical establishment's morbid fear of opioids. we deserve relief of suffering... we deserve a life of normalcy and we absolutely deserve a medical professional who takes on our RLS demons with the resolve to use what is necessary. Sorry if I'm being preachy this morning, everyone, I just want you to feel better, brandy, and your doctor's response to your methadone question is so.... weak. Thank you for that response. The truth is, for the first time (and I have had RLS all my life), in addition to being frustrated, exhausted, angry, etc - I'm scared. What if I can't get help? I think I'll lose my mind. I certainly don't want to become an addict. I just feel afraid, and hearing responses like yours, that still have some fire and conviction, help combat the fear a little and reminds me that there is a lot of research out there and there are things that can help us. Thanks, again.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Hi to all,
Fidget you should write me a Quality of Life statemnet about that. I mean it, I've tried for years to figure out the best way to say just what your saying and can't so try for me will you? Awesome answer.
Brandy, I it sounds like the Mirapex allowed you to sleep, that is a great thing. And you might find that it will work well for you, so no more fears about what you've read about many of us who have tried it.
I might have done better on it if my doc would have included pain meds.
Yes, I think the heavieness is likely the result of the Mirapex, but you may have hit REM sleep last night and finally gotten a achance to start to heal.
If your worried about the pain meds and work, my question is, can you break one in half and only cut the edge off, so that your legs don't remind you the are attayched all day. That is how I started with pain meds.. At first it was a 1/4 to see if it helped and I could still comfortably function. Until you know how much works of any meds, it's best to start slow and in some doses (if possible), like while out or at work, then you can bang one back when you get home. LOL
I'm glad you slept. That is a blessing in itself.
hang in there and let those fears settle down. You've read some much here, that I want you to know our stories don't all add up to someone else's normal all the time.
Your doing great honey.
hugs love and the moon.
Lyne
Fidget you should write me a Quality of Life statemnet about that. I mean it, I've tried for years to figure out the best way to say just what your saying and can't so try for me will you? Awesome answer.
Brandy, I it sounds like the Mirapex allowed you to sleep, that is a great thing. And you might find that it will work well for you, so no more fears about what you've read about many of us who have tried it.
I might have done better on it if my doc would have included pain meds.
Yes, I think the heavieness is likely the result of the Mirapex, but you may have hit REM sleep last night and finally gotten a achance to start to heal.
If your worried about the pain meds and work, my question is, can you break one in half and only cut the edge off, so that your legs don't remind you the are attayched all day. That is how I started with pain meds.. At first it was a 1/4 to see if it helped and I could still comfortably function. Until you know how much works of any meds, it's best to start slow and in some doses (if possible), like while out or at work, then you can bang one back when you get home. LOL
I'm glad you slept. That is a blessing in itself.
hang in there and let those fears settle down. You've read some much here, that I want you to know our stories don't all add up to someone else's normal all the time.
Your doing great honey.
hugs love and the moon.
Lyne