Do most of u visit a neurologist also for help with your RLS problems? Is it essential and are most generally well versed when it comes to treating RLS? My family doctor basically knows squat about it so i'm wondering if a visit to a neurologist might be the way to go, or not...
snowbound
Should i visit a neurologist?
Should i visit a neurologist?
A man generally has two reasons for doing a thing. One that sounds good, and a real one. ~ J. Pierpoint Morgan
I see a sleep specialist, who is actually a neurologist that specializes in sleep disorders. He's board certified in neurology, sleep medicine, and psychiatry. I wouldn't trust my GP to know a tenth of what he knows about RLS, or to treat mine.
I think the specialization in sleep disorders, and preferably in the treatment of RLS specifically, is vital in a neurologist. Jack-of-all-trades neurologists will be hit-and-miss. I've seen a good number of people talk about getting sneered at, fobbed off, or talked down to by their neurologists. You definitely want to do the research to see who's experienced and successful in the treatment of RLS (and PLMD) in your area. It could make all the difference.
I think the specialization in sleep disorders, and preferably in the treatment of RLS specifically, is vital in a neurologist. Jack-of-all-trades neurologists will be hit-and-miss. I've seen a good number of people talk about getting sneered at, fobbed off, or talked down to by their neurologists. You definitely want to do the research to see who's experienced and successful in the treatment of RLS (and PLMD) in your area. It could make all the difference.
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.
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Penguinrocks
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Hello....
I think I need to find a penguin refuge some where....things just aren't working as I see them in my minds eye...
remember me talking bout the severe pain when I laff too hard? Well, I went to the Mayo Clinic web site and found somthing related to "laughing headaches" called THUNDERCLAP headaches. Seems like a fitting name as it comes that quick and the pain "rolls across the sky that is my brain"...(yes, I'm just as weird as I've always been)...the neuro appt is on the 13th.
seems that thunderclaps can be caused by a cyst or cysts cutting off the spinal cord fluid to the brain...yay....anyone have any of these headaches? anyone gone thru any type tests yet?
the tremors aren't decreasing...not increasing either
....the muscles being rigid? OUCH...
I've been reading thru y'alls posts that I have missed lately and i just want to say ...I AM SO SO SO SO SORRY THAT I'VE NOT BEEN ANSWERING MUCH.
I'm such a bad penguin......
I throw my waddling body on the floor and beg forgiveness...............i do not want to lose any of you....you ALL have been my rock, my strength, my salvation, I NEVER want any of you to think I've taken ANY of you for granted....
love you all your truly humble penguin....
I think I need to find a penguin refuge some where....things just aren't working as I see them in my minds eye...
remember me talking bout the severe pain when I laff too hard? Well, I went to the Mayo Clinic web site and found somthing related to "laughing headaches" called THUNDERCLAP headaches. Seems like a fitting name as it comes that quick and the pain "rolls across the sky that is my brain"...(yes, I'm just as weird as I've always been)...the neuro appt is on the 13th.
seems that thunderclaps can be caused by a cyst or cysts cutting off the spinal cord fluid to the brain...yay....anyone have any of these headaches? anyone gone thru any type tests yet?
the tremors aren't decreasing...not increasing either
....the muscles being rigid? OUCH...
I've been reading thru y'alls posts that I have missed lately and i just want to say ...I AM SO SO SO SO SORRY THAT I'VE NOT BEEN ANSWERING MUCH.
I'm such a bad penguin......
I throw my waddling body on the floor and beg forgiveness...............i do not want to lose any of you....you ALL have been my rock, my strength, my salvation, I NEVER want any of you to think I've taken ANY of you for granted....
love you all your truly humble penguin....
Beware the Penguin
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Polar Bear
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Penguin... sometimes I don't post for ages, even tho I keep up with reading the posts, there are times when we all feel more pro-active than others. We won't feel taken for granted. 
I have never heard of thunderclap headaches before. Good luck on the 13th.
I have never heard of thunderclap headaches before. Good luck on the 13th.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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ViewsAskew
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Oh, Penguin....all that throwing around can't be good even with Penguin padding! Please stop prostrating yourself!
Never had any of those tests...I'm not functional again today (no brain), but seems there is a forum for neuro stuff somewhere that I've been on that is good. They would know. Just can't remember who there are
Maybe after I wake up (sure, that's going to happen!) I'll remember
Never had any of those tests...I'm not functional again today (no brain), but seems there is a forum for neuro stuff somewhere that I've been on that is good. They would know. Just can't remember who there are
Maybe after I wake up (sure, that's going to happen!) I'll rememberAnn - 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.
Poor Penguin...no one thinks you don't care. All that flaying around could not be good for you.
My only experience with a neurologist was strange. It was for a nerve conduction study. It showed positive for nerve damage. I don't think he said much except to give me instructions for the test. But he did ask if I had RLS. And then suggested Sinemet. So much for RLS knowledge. My GP is much better at listening and trying new things to "see if they work".
I do know all doctors are not the same. And some seriously lack in bedside manner. As for your condition..I have never heard of it. Will do research...Lots of luck...Pat
Oh Aiken, I went to a sleep clinic because I had sever insomnia. And while hooked up to all the wires and stuff, I did not sleep at all that night. Which was what I was doing at home. NOT SLEEPING! They came in the next morning and said they could not help me because I did not go to sleep. Duh??? I mentioned the RLS and they too suggested Sinemet.
My only experience with a neurologist was strange. It was for a nerve conduction study. It showed positive for nerve damage. I don't think he said much except to give me instructions for the test. But he did ask if I had RLS. And then suggested Sinemet. So much for RLS knowledge. My GP is much better at listening and trying new things to "see if they work".
I do know all doctors are not the same. And some seriously lack in bedside manner. As for your condition..I have never heard of it. Will do research...Lots of luck...Pat
Oh Aiken, I went to a sleep clinic because I had sever insomnia. And while hooked up to all the wires and stuff, I did not sleep at all that night. Which was what I was doing at home. NOT SLEEPING! They came in the next morning and said they could not help me because I did not go to sleep. Duh??? I mentioned the RLS and they too suggested Sinemet.
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SquirmingSusan
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Oh my gosh, Pat. They couldn't help you because you couldn't sleep. 
You know, for a while, doctors had a reputation for being rather intelligent people. Now I know why that reputation is fading. It really seems like it can be all about sorting people and their conditions into categories, like sorting buttons by color or shape. And then when one doesn't fit the category they don't know what to do.
"Oh my gosh! This person is at a sleep clinic and can't sleep. Whatever will we do?"
You know, for a while, doctors had a reputation for being rather intelligent people. Now I know why that reputation is fading. It really seems like it can be all about sorting people and their conditions into categories, like sorting buttons by color or shape. And then when one doesn't fit the category they don't know what to do.
"Oh my gosh! This person is at a sleep clinic and can't sleep. Whatever will we do?"
Susan
A negative result is still a result. 100% wakefulness is no less valid than 10% wakefulness.
On the other hand, it's true that they can't diagnose any issues you might have while asleep (e.g. PLMs) if you don't sleep, and maybe that's all they can do at that clinic.
Bummer, either way.
On the other hand, it's true that they can't diagnose any issues you might have while asleep (e.g. PLMs) if you don't sleep, and maybe that's all they can do at that clinic.
Bummer, either way.
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.
Yeah, it really got to me. I knew I had PLM and RLS. And I told them before I was hooked up to all that stuff. They were looking for sleep apnea (sp?) and I really think if the problem was anything else they did not know what to do. I talked to the psyh and he said I was a classic insomniac. But he did not give me any suggestions to help. Hence..back to my old faithful GP. I'm much better now and sleeping pretty good most nights. (but I did gain about 30 lbs while not sleeping) Oh well...Pat
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ViewsAskew
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That must be common, Pat, because a similar thing happened to me. I did fall asleep at about 3 AM - at 3:45 they awakened me and put a mask on me. They said they saw arousals in my brain waves....DUH - from the kicking! I never had a snore or breathing issue.
Before I tried to sleep, the tech was talking to me telling me that he was such a hero finding sleep apnea in so many people - he seemed predisoposed to look only for that. I tried talking about RLS and he was determined that all sleep issues were because of apnea.
Before I tried to sleep, the tech was talking to me telling me that he was such a hero finding sleep apnea in so many people - he seemed predisoposed to look only for that. I tried talking about RLS and he was determined that all sleep issues were because of apnea.
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.
Well, to be fair to them, the vast majority of sleep issues really are due to apnea. The American population is, on average, overweight, and it doesn't take much of that to induce apnea.
Still, if you can't find the horse, you should be ready to look for the zebra.
Still, if you can't find the horse, you should be ready to look for the zebra.
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.
Ann- I think you bring up an important point-- to me, more important than your doctor's specialty is their ability to be flexible and have an open mind when it comes to treating disease. Your experience with the sleep clinic and their love-affair with sleep apnea reminded me of my first sleep clinic appointment and their love affair with iron. Sleep clinic: we need to check your iron... Josh: I already had it checked- it was high normal... sleep clinic: all RLS is related to iron stores, you must be low... Josh: no, I know what the normal values are, Sleep clinic: oh wait, here's the results... yep, they're normal--- you must not have RLS! 
Doesn't matter if you're a neurologist, a FP or a proctologist--- if you can't think outside the box, you will pretty much stink as a provider.
I ended up going to my FP after 2 horrendous sleep clinic/sleep specialist visits and 2 different neurologists wanting to put me on sinemet every night. I haven't looked back!
Doesn't matter if you're a neurologist, a FP or a proctologist--- if you can't think outside the box, you will pretty much stink as a provider.
I ended up going to my FP after 2 horrendous sleep clinic/sleep specialist visits and 2 different neurologists wanting to put me on sinemet every night. I haven't looked back!
Josh
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ViewsAskew
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I think a lot of us have similar stories, Josh. And it's pretty frustrating.
My "doctor in training" for treating me is relatively open, but she's still a bit rigid on some things. Like the iron. SHe wants me to have infusions. OK, I guess, but increasing my ferritin from 9 to 38 didn't do a thing. Nothing. As long as she continues treating it and if the iron doesn't do anything she agrees to let that drop, I'm cool.
As you said, it's all about flexibility.
My "doctor in training" for treating me is relatively open, but she's still a bit rigid on some things. Like the iron. SHe wants me to have infusions. OK, I guess, but increasing my ferritin from 9 to 38 didn't do a thing. Nothing. As long as she continues treating it and if the iron doesn't do anything she agrees to let that drop, I'm cool.
As you said, it's all about flexibility.
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.