A newbie here, so I'm just kickin' this out there.
a newbie here, so just kickin ths out
BL I am so sorry that you had another bad experience with a dr. So glad that Ann was able to shed some light to go where she goes. Keep us posted and let us know how it worked out. If I had the money, I would pay for your visits. I hope that you do not mind me saying that. I ask God everynight to help my family on this board to get through some of these times.
Charlene
Taking one day at a time
Taking one day at a time
Ann,
I just mapped out Peotone and it's 60 miles from me as well. South and slightly east. If you're willing to go that far for him and you're that sure he'll prescribe all the meds then it will be a real consideration for me. I can't afford to screw around much longer. My podiatrist is great about giving me opioids and whatever else I want to try but he's not sure he can treat me with the major rls drugs for very long as it's not his specialty, I should say he is a specialist of a different kind, and after everything he's done for me I certainly dont' want to put pressure on him. I need someone who will continue me on what I take now with adjustments, etc. until I can feel somewhat normal again. I'm almost at the point of being willing to drive 60 miles to see someone who's totally open and willing to work with me. You must go to him for a good reason so I will keep it in mind as I try a couple more closer doctors. May I ask what you're currently taking / have tried thus far?
I just mapped out Peotone and it's 60 miles from me as well. South and slightly east. If you're willing to go that far for him and you're that sure he'll prescribe all the meds then it will be a real consideration for me. I can't afford to screw around much longer. My podiatrist is great about giving me opioids and whatever else I want to try but he's not sure he can treat me with the major rls drugs for very long as it's not his specialty, I should say he is a specialist of a different kind, and after everything he's done for me I certainly dont' want to put pressure on him. I need someone who will continue me on what I take now with adjustments, etc. until I can feel somewhat normal again. I'm almost at the point of being willing to drive 60 miles to see someone who's totally open and willing to work with me. You must go to him for a good reason so I will keep it in mind as I try a couple more closer doctors. May I ask what you're currently taking / have tried thus far?
The light of a good character surpasseth the light of the sun
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ViewsAskew
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I'll try to keep this short. I was put on DAs for PLMD - not RLS. I had RLS, but only once a month or so and I could manage it. The PLMD was horrible. I augmented within days to daily RLS. He upped the dose. The short story is that he didn't understand it and I wasn't knowledgable. I ended up with 24/7 RLS as he kept increasing the dose over an 18 month period. Then he tried other DAs - duh!!!!!! Didn't work, I dumped him.
It took me almost a year to find a doc to help me get off of the DAs. I was put on Mirapex, Requip, Sinemet, Neurontin, iron, clonazepam, Restoril, Valium, Vicoden, and Darvon by varying doctors - I think I tried a total of 7 or 8 docs. I tried three times to get off the Mirapex and my RLS was so horrible, I couldn't ever stop it. I corresponded with Dr Buchfurer and knew that Methadone might work to get me off. No one would let me try it.
Eventually I went to see my old family doctor from when I lived very far south. He didn't remember me (I'd only been there a few times and it was 10 years earlier). But, he listened and he read the emails from Dr B, and he read the algorithm. He agreed to try Ultram (my request) to see if it would work. It didn't. So, we went to Methadone. It worked. I got off the Mirapex and my RLS went down to nightly, instead of 24/7. I still have it daily - nothing will change that now. But, it's much better than it was. he asked me what I wanted to do - stay on the Methadone or try something else - I chose to stay on it. I know the DAs won't work, and I don't have painful RLS so the Neurontin doesn't seem to help at all. Drugs like Klonopin are not known for helping stop PLMS and didn't work when I was on them, so I didn't feel I had too many choices. It works most of the time, it stops the PLMs, and the side effects (for me) are much less than on any of the other drugs.
It took me almost a year to find a doc to help me get off of the DAs. I was put on Mirapex, Requip, Sinemet, Neurontin, iron, clonazepam, Restoril, Valium, Vicoden, and Darvon by varying doctors - I think I tried a total of 7 or 8 docs. I tried three times to get off the Mirapex and my RLS was so horrible, I couldn't ever stop it. I corresponded with Dr Buchfurer and knew that Methadone might work to get me off. No one would let me try it.
Eventually I went to see my old family doctor from when I lived very far south. He didn't remember me (I'd only been there a few times and it was 10 years earlier). But, he listened and he read the emails from Dr B, and he read the algorithm. He agreed to try Ultram (my request) to see if it would work. It didn't. So, we went to Methadone. It worked. I got off the Mirapex and my RLS went down to nightly, instead of 24/7. I still have it daily - nothing will change that now. But, it's much better than it was. he asked me what I wanted to do - stay on the Methadone or try something else - I chose to stay on it. I know the DAs won't work, and I don't have painful RLS so the Neurontin doesn't seem to help at all. Drugs like Klonopin are not known for helping stop PLMS and didn't work when I was on them, so I didn't feel I had too many choices. It works most of the time, it stops the PLMs, and the side effects (for me) are much less than on any of the other drugs.
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.
Excellent summation Ann, I understand. And thank you very much. I've probably had rls most of my life but it wasn't a major irritation - until it became painful. Over the last year the sensations in my legs, painful and otherwise, have steadily increased. While researching the symptoms I came across rls and spoke to my father about it to find out that he, along with at least 3 known relatives, has rls. He's always complained about his legs so I thought to ask him first and lo and behold! I've been seeing my podiatrist for years for unrelated foot problems. So he's familiar with my medical history and comfy treating me with any drugs that he is comfy with in general. I've tried a number of different pain medications for my feet to no avail and while the pain in my legs has been increasing the lortab (vicodin) has been the only thing that will phase it. Now that I've read the research and algorithm it makes sense. I've been taking Lyrica for 6 weeksish and since it hasn't been the miracle I'd hoped for and is proven to cause weight gain and hellish withdrawls I would like to quit now while it's easiest and try Requip. I've been depending on my podiatrist now to treat this with free samples of Lyrica (why is started lyrica) and lortab. He's a specialist and isn't supposed to be treating rls. My primary doctor is. Also the lortab is losing it's efficacy and he's not thrilled with upping my dose. However as you know from my nightmare post last week I can't seem to find a primary doctor who will touch me with a ten foot pole and the "specialist" I've called costs way too much and doesn't seem to know a thing. Considering I'm uninsured at the moment I can't afford to go through the yellow pages and make appts until I find an empathetic and willing primary doctor. If the office visits can be at a reasonable frequency and if he's willing to let me continue narcotics and work with the dosing while I try any and all other meds that might help as well, I would seriously consider seeing your doctor. The symptoms are getting worse by the day. Right now I'm out of Lyrica and have taken my lortab for the day. I'm absolutely miserable. You've probably gathered a lot of this already from previous posts but I wanted to break it all down for you one quick time so that if you can read this and feel confident that your doctor will feel comfy working with me I can devote serious consideration to seeing him. I'm sure you can appreciate my apprehension or, cautiousness rather. At this point I'd love to relieve my podiatrist of this duty and take up treatment with a good man weather I have to drive across the world for it or not. Fact is, it's not across the world and with the way i'm feeling right now I'm actually excited that there's a good prospect so close. That's how crappy I feel and how scared I am of more dissapointing doc searching. I really appreciate it Ann. I'm sorry that you have daily rls because of this madness. I am having it all day now as well and I want to nip it before it gets more intense. I remember just a year ago when it was mildly irritating in the morning and now I would love to just have to deal with it at night.
The light of a good character surpasseth the light of the sun
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ViewsAskew
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I'm off to see him sometime this week - I need med refills. I think I goofed - he's only in the office on Monday and I missed that. I'll either see his son (it's a family of docs - Gary, Christine and Trevor - and they all go by their first names) who does a good job, too (but just not quite as empathetic) or see him in Indiana. Not too many choices.
I'll ask him when I'm there what he thinks. If he says he's up to the challenge, I'll let you know. When I went to him, I was in such bad shape I don't think he felt he could say no!
I'll ask him when I'm there what he thinks. If he says he's up to the challenge, I'll let you know. When I went to him, I was in such bad shape I don't think he felt he could say no!
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.