Thank so much for your concern. Quite honestly, nobody in my life wants to hear about this. If I even mention it, they change the subject, so I just don't talk about it anymore.
Right off the bat, I want to say that the only thing that keeps me from sleeping are very severe leg cramps. They wake me up every half hour and take at least ten minutes to go away. I have no idea why I get them, but do they hurt. Often, the next day I can't even tough the muscles because they are so sore. I take Ativan and it puts me to sleep.
My biggest RLS problem is during the daytime. I can get symptoms at any time. I also get them in my shoulders and arms from time to time.
It is 8 am, I've been up since 2 am and am having symptoms already.
I cannot go back to the doctor who prescribed the Mirapax. She will not prescribe anything else.
My psyciatrist is the one who sent me to an RLS clinic to medication, which they did not prescribe. He doesn't know what to prescribe. BTW, he's the one who prescribed the Abilify, which was the kiss of death for me.
I will do my best to get in touch with the new doctor tomorrow. Her office staff is useless. I left an envelope for her with them that she never got. It is a large hospital and she shares space with a lot of other doctors.
I may write her a note, go over and make sure she takes physical possession of it. This is quite a chore because, as I said, it is not an easy place to get to. Travelling time each way is about one hour.
I will do everything I can.
Dale
New Doctor
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Muscle cramps/Cal/mag vit
Also try taking a Calcuim/ mag. vit. I will get muscle cramps also, called Charlie horses, and they hurt realllly bad. I can usually get up and take a couple cal/mag vits and in short time no more muscles cramps. You might try taking a couple an hour or so before bed.
The cramps are not really a part of rls. So that might be what is causing your Drs not to understand about your rls.
you are saying you only have the creepy crawlies type feelings in your legs during the day and not at night? Wow that would be great, it so much easier to move during the day! While most of my rls is at night, I do have some day time rls at times, just not often.
The cramps are not really a part of rls. So that might be what is causing your Drs not to understand about your rls.
you are saying you only have the creepy crawlies type feelings in your legs during the day and not at night? Wow that would be great, it so much easier to move during the day! While most of my rls is at night, I do have some day time rls at times, just not often.
I haven't tried quinine, but I'll loudly second the calcium.
One of my feet had had horribly painful arch cramps at night for all of my life, but when my wife finally convinced me to try calcium, it stopped happening pretty soon thereafter. I've taken calcium supplements ever since, and years later, my foot has still not cramped at night, even once.
One of my feet had had horribly painful arch cramps at night for all of my life, but when my wife finally convinced me to try calcium, it stopped happening pretty soon thereafter. I've taken calcium supplements ever since, and years later, my foot has still not cramped at night, even once.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
I don't have a creepy, crawling feeling. I feel as though I have to tighten the muscle in my leg. I flex the leg while raising it at the knee. That is not an answer because it is exhausting and I can only hold it for a few seconds. If I don't do that, I have to release the energy somehow. I either have to shake my leg...a lot...or I get a tremor through my body. Shaking the leg doesn't really work. Only standing up gives relief.
I also only get it in one leg at a time. No one leg, in particular, but never in both legs at the same time.
Dale
I also only get it in one leg at a time. No one leg, in particular, but never in both legs at the same time.
Dale
Sleuth,
Can you make an appointment with the new doc? Plez do so, I should think you can. Your description of the way your legs want to tighten up is RLS. There has apparently been a glitch in the order for iron infusion, a decision about what medicines to give you, and so forth. The only way I know to straighten it out is have a bona fide appointment with that new doc.
You can also try to make an appointment with a doc much closer to your home, a family doc or a group of internal medicine docs, as a brand new patient, go in and get a checkup, and tell them about your sleep, about your RLS, that you need some medicines...Mirapex did not work, bring a printout of some info on RLS, and so forth. Show them your urgency in taking care of this, they should be able to help you.
GG
Can you make an appointment with the new doc? Plez do so, I should think you can. Your description of the way your legs want to tighten up is RLS. There has apparently been a glitch in the order for iron infusion, a decision about what medicines to give you, and so forth. The only way I know to straighten it out is have a bona fide appointment with that new doc.
You can also try to make an appointment with a doc much closer to your home, a family doc or a group of internal medicine docs, as a brand new patient, go in and get a checkup, and tell them about your sleep, about your RLS, that you need some medicines...Mirapex did not work, bring a printout of some info on RLS, and so forth. Show them your urgency in taking care of this, they should be able to help you.
GG
"It's not how old you are; it's how awful you feel."
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
I will try the Calcium. Thanks.
Right now, I am really upset...again. This new (soon to be ex-) doctor, has not returned my calls for the second day in a row.
This doctor broke my heart. She made so many promises, but four weeks after meeting with her, all I have is a bottle of multi-vitamins she suggested I take.
I am sending her an email telling her exactly how I feel. She had no right to extend my suffering by four weeks. I think her behavior was both unprofessional and rather inhumane. It is certainly not something I would expect from a doctor and not what I want in a doctor who is treating me for a delicate illness.
I cannot just go to an internist and ask them to prescribe medications. They don't know what to do and won't do it. I have to find someone who has some familiarity with this illness.
I will probably go to Johns Hopkins, but I think you need a doctor back home if you do that.
Oh, I can't really think straight right now. I'm so upset and I feel like such a fool for believing all the promises she made to me. I don't know why she did all that only to leave me dangling. I can tell you, I will never trust another doctor who treats me for this.
Dale
Right now, I am really upset...again. This new (soon to be ex-) doctor, has not returned my calls for the second day in a row.
This doctor broke my heart. She made so many promises, but four weeks after meeting with her, all I have is a bottle of multi-vitamins she suggested I take.
I am sending her an email telling her exactly how I feel. She had no right to extend my suffering by four weeks. I think her behavior was both unprofessional and rather inhumane. It is certainly not something I would expect from a doctor and not what I want in a doctor who is treating me for a delicate illness.
I cannot just go to an internist and ask them to prescribe medications. They don't know what to do and won't do it. I have to find someone who has some familiarity with this illness.
I will probably go to Johns Hopkins, but I think you need a doctor back home if you do that.
Oh, I can't really think straight right now. I'm so upset and I feel like such a fool for believing all the promises she made to me. I don't know why she did all that only to leave me dangling. I can tell you, I will never trust another doctor who treats me for this.
Dale
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Dale, my heart breaks for you. You will need a local doc if you go to Johns Hopkins, but that can be a GP. If you have a reasonable GP, you'll be OK.
Just wondering, have you tried any local Websites that rate doctors? I found my current gynecologist on Yelp, of all places. And I LOVE her. She's worth cloning, but doesn't treat RLS, unfortunately. I know there are other sites that do this, too, so this may be a way to find a good, solid GP who will work with you and the Johns Hopkins docs.
I just hate that this happens to us. The only people who are going to make this better are the people who are suffering. I know not all of us can, but if anyone reading this thread is as fired up as I am, please consider a way you can make a difference. It doesn't have to be big. But, what a difference if we all have the courage to speak up, form an RLS support group, take articles to our doctors, etc. Anything and everything that we do can make a difference.
Just wondering, have you tried any local Websites that rate doctors? I found my current gynecologist on Yelp, of all places. And I LOVE her. She's worth cloning, but doesn't treat RLS, unfortunately. I know there are other sites that do this, too, so this may be a way to find a good, solid GP who will work with you and the Johns Hopkins docs.
I just hate that this happens to us. The only people who are going to make this better are the people who are suffering. I know not all of us can, but if anyone reading this thread is as fired up as I am, please consider a way you can make a difference. It doesn't have to be big. But, what a difference if we all have the courage to speak up, form an RLS support group, take articles to our doctors, etc. Anything and everything that we do can make a difference.
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.
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Dale, please do write an email to your doctor telling her how disappointed you have been, and how she has left you suffering. Doctors need to know. Also, you don't necessarily need to find a general doctor who knows much about RLS in order for that doctor to work with the people from John's Hopkins - after all, that's why you're going to John's Hopkins. You'll just need someone who is open to consulting with an expert, and is willing to learn. There has to be at least one of those in your area!
It's so hard to keep pushing through all the obstacles to getting quality care. Keep on keepin' on.
It's so hard to keep pushing through all the obstacles to getting quality care. Keep on keepin' on.
Susan
Sleuth,
I am so sorry to hear about all this with you. I feel for you, that's for sure. It is horrible what has happened to our health care system. And I'm doubly sorry I tried to "fix it" by telling you to go to this doc and that doc, when obviously they are not gonna help you. You are indeed stuck between a rock and a hard place, as you said. I suppose I'd go out of my mind, were I you. But wait a minute, I already did! Ha! Yup, we all been down your road, we hear your pleas, and would like nothing more than to reach thru this hyar machine and help you out. Sigh.
Hon, next time you go to bed, put some knee-high support hose on your legs, they should stop the RLS discomfort just long enough for you to go to sleep. That's what I do in emergencies. And I guess you'll have to sit down with a phone book and start making some calls, until you hit on a doc who knows about RLS. And you're right, you shouldn't have to tell him what to give you, and I apolgize if it sounded like we were telling you to do that. If the doc knows about RLS, he will also know what to give you. We're just telling you what works for us, is all, altho I must admit, we are an empowered lot here, and sometimes we think we're the docs!
I think your email is an excellent idea to that negligent doc. Who knows, maybe you'll wind up with an appointment out of the deal, and some meds, and your prayers and ours will be answered! I swear, if I could mail you some of my drugs, I would, but with the K-9s checking out everything these days, I'd wind up in the jailhouse.
Come back here anytime you want, we'll cry with you, we'll try to hold your hand, we'll comfort you when all is lost. And we'll keep trying to help you figure this out! I don't drink, but have you thought about getting good and drunk! Ha! Well, write you that note to the doc and email it to her right away! And maybe find you a local doc who knows about RLS who can start fresh with you and maybe help out. In the meantime, take a real warm bubble bath, plug up your ears with kleenex, have a good cry, and drink a glass of wine, or two, or three.... Smile.
GG
I am so sorry to hear about all this with you. I feel for you, that's for sure. It is horrible what has happened to our health care system. And I'm doubly sorry I tried to "fix it" by telling you to go to this doc and that doc, when obviously they are not gonna help you. You are indeed stuck between a rock and a hard place, as you said. I suppose I'd go out of my mind, were I you. But wait a minute, I already did! Ha! Yup, we all been down your road, we hear your pleas, and would like nothing more than to reach thru this hyar machine and help you out. Sigh.
Hon, next time you go to bed, put some knee-high support hose on your legs, they should stop the RLS discomfort just long enough for you to go to sleep. That's what I do in emergencies. And I guess you'll have to sit down with a phone book and start making some calls, until you hit on a doc who knows about RLS. And you're right, you shouldn't have to tell him what to give you, and I apolgize if it sounded like we were telling you to do that. If the doc knows about RLS, he will also know what to give you. We're just telling you what works for us, is all, altho I must admit, we are an empowered lot here, and sometimes we think we're the docs!
I think your email is an excellent idea to that negligent doc. Who knows, maybe you'll wind up with an appointment out of the deal, and some meds, and your prayers and ours will be answered! I swear, if I could mail you some of my drugs, I would, but with the K-9s checking out everything these days, I'd wind up in the jailhouse.
Come back here anytime you want, we'll cry with you, we'll try to hold your hand, we'll comfort you when all is lost. And we'll keep trying to help you figure this out! I don't drink, but have you thought about getting good and drunk! Ha! Well, write you that note to the doc and email it to her right away! And maybe find you a local doc who knows about RLS who can start fresh with you and maybe help out. In the meantime, take a real warm bubble bath, plug up your ears with kleenex, have a good cry, and drink a glass of wine, or two, or three.... Smile.
GG
"It's not how old you are; it's how awful you feel."
I sent the doctor a scathing email last night. She replied and apologized up the gazoo. We made arrangements to talk this morning. She called.
She wants me to try Gabapentin (Neurontin).
She said she cannot find a doctor to administer the iron transfusion. She cannot visit patients in the hospital. She also said that the insurance companies will not pay for this because they think it is not cost effective. Bummer.
Anyway, any comments on this Neurontin?
Thanks so much.
Dale
She wants me to try Gabapentin (Neurontin).
She said she cannot find a doctor to administer the iron transfusion. She cannot visit patients in the hospital. She also said that the insurance companies will not pay for this because they think it is not cost effective. Bummer.
Anyway, any comments on this Neurontin?
Thanks so much.
Dale
Last edited by Sleuth on Tue Apr 28, 2009 2:06 pm, edited 1 time in total.
man if I had to deal with all this... I would like... shoot up a shopping mall or something to suicide by cop.. That's insane. And then saying they'll call and not calling what the hell.
I had to deal with my own problems with my medication refill dates, which ultimately involved me going to the office hoping to get a minute with my doc, and then him giving me the 3rd degree until it finally clicked in his head that the dates were off and it was his error.. lol then then pharmacy could only give me 50 pills, and said they'd call yesterday cause it would be in by then.. still haven't heard from them, and they owe me another #60.
You gotta get help from somewhere, anywhere.. You won't know what will happen with Hopkins unless you put yourself into the situation. Then you will be forced to deal with it and find a better doctor as well - and in the mean time I would hope whoever you see there would prescribe you some medication on the short-term..
Maybe even after hearing of your experience with these other doctors (the last one especially) they might be able to pull some strings and extend how long they could continue to consult/treat you and prescribe meds.
I had to deal with my own problems with my medication refill dates, which ultimately involved me going to the office hoping to get a minute with my doc, and then him giving me the 3rd degree until it finally clicked in his head that the dates were off and it was his error.. lol then then pharmacy could only give me 50 pills, and said they'd call yesterday cause it would be in by then.. still haven't heard from them, and they owe me another #60.
You gotta get help from somewhere, anywhere.. You won't know what will happen with Hopkins unless you put yourself into the situation. Then you will be forced to deal with it and find a better doctor as well - and in the mean time I would hope whoever you see there would prescribe you some medication on the short-term..
Maybe even after hearing of your experience with these other doctors (the last one especially) they might be able to pull some strings and extend how long they could continue to consult/treat you and prescribe meds.