My doctor sucks. Any suggestions?

jessdell · Post by **jessdell** » Tue Aug 25, 2009 4:06 pm

so I'm 19 years old, and i’ve had RLS for as long as i can remember. and its embarrassing. and i admitted it to people other than my boyfriend for the first time over a month ago. i said i was afraid to go to the doctor, and that i was afraid he’d think i was a freak. my boyfriend convinced me to go, because doctors deal with medical problems, and we’d done tons of research, and of course it’s a medical problem.

so yeah, I went to the doctor in July. and you know what? i was right. about being scared. It was one of the most embarrassing experiences of my life. The doctor came in after I talked with the nurse and said “So, you’re RESTLESS, huh? fidgety?” and i said “uh..yeah.” and he said, “tell me about it.” so i told him. I told him I couldn’t remember a time without it. I told him it used to be pretty much all just my legs, but over the past few years it had become my whole body. i was restless everywhere. i said this, terrified of what would happen, but starting to finally relax because after this visit I would be helped. And hopefully it would go away.

He laughed. Loudly. “There’s no such thing!” he said. “that’s not a real medical problem. Restless leg syndrome is in your legs. I have no idea what you’re talking about,” he laughed more. I was horrified. It was unreal. Did I really just get made fun of by a doctor? But he wasn’t done there.

“well..” I said, choking back tears, “it is… i feel it everywhere. I mean..uh..i’ve read about it and stuff, and it seems to fit the description of RLS. um..i mean, it feels like something is crawling under my skin. an awful creeping feeling.”

laughing once again, he said “there’s not a medical problem in existence that causes a ‘crawling feeling.’” he went on, made some jokes, but i couldn’t hear him. my ears were burning. i wanted to die. and i wanted to disappear so badly. My face was red and my eyes were full of tears. he felt around, and said “well, I guess we can do a blood test, but we won’t find anything. after that i can refer you to a neurologist, but like i said, there’s no such medical condition, so you can go, but they’ll probably just send you to a psychiatrist!” (more overbearing loud laughter at his own hilarious joke. haha, get it, i’m psychotic?? hahahaha, it’s all in my head? get it? etc etc.) So i started crying, but i just stared at the ground so he wouldn’t see me. he filled out the paper work to take to the woman who’d do a blood test. He said, “you’ve probably just got anxiety or something.” “well,” i said, “i don’t think thats it because it’s been this way as long as i can remember. i can’t have always had the anxiety.” i said this crying, pathetic, and embarrassed. the guy either didn’t notice or didn’t care. “well, i’ll tell you one thing, there’s certainly not anything i can do for you. It’s not a medical issue. We’ll call you Monday with the results, but there won’t be anything.”

and with that, he handed me off to the blood work specialist. I wish I were exaggerating, but that’s exactly the way it went. I remember every word and every laugh. She was a sweet woman. She seemed to know something was wrong. i suppose it could have had something to do with my red, puffy face. she made jokes (this time not about me). she asked if i’d ever had my blood drawn, i said yes. but i wasn’t too good at it and it made me lightheaded. she said “alright honey, well you just gotta find your happy place. some days its harder than others. someday when i find MY happy place, i just wanna stay in there all day.” and then it was over. and i left. i had to wait for my boyfriend to pick me up, but i didn’t wait in the lobby, and i didn’t wait outside the doors. i ran across the street, away from the office. i was humiliated. and finally, i sobbed.

so I’m still restless. and now I think I may be always because I'm once again nervous about going to a doctor. Anyway I was wondering if anyone knew of a doctor in the Atlanta area who was a bit more...sympathetic? understanding? someone who wouldn't make fun of me?

Granted, it took me a while to get over the whole situation, but I do know he's uninformed. First of all, a blood test couldn't detect RLS so him saying we'd do one was either out of his lack of knowledge or just to mock me further and let me know how clueless I was. The thing is, I thought he'd be understanding because his nurse has RLS. but hers isn't bad, and its just in her legs. She just takes Benadryl she said. I guess that's acceptable RLS. mine keeps me stretching, pulling, hitting, and moving all day and night. I guess that's not worth diagnosing.

Post by **ViewsAskew** » Tue Aug 25, 2009 5:47 pm

Benedryl is not acceptable for RLS! There are a few people who it seems to put to sleep, so it works, but for the vast majority of us? It makes it worse!

I've only a minute, but I know others will be along soon.

Just wanted to say that Dr Rye is who you want to see, but I don't know how close he is to you. He's at Emory. He's an RLS specialist who studies the disease. He's a super guy - will NOT laugh at you, but he might laugh with you simply because he, too, has RLS. If any doctor out there gets it, it's him.

Gotta run...

Post by **Polar Bear** » Tue Aug 25, 2009 6:48 pm

Hi Jessdell,

I have nothing to offer with regards to recommendations for a doc, (I live in UK) but just want to say how sorry I am that you had to go through such an experience with such a pain in the **** doc that you went to for help. To say it doesn't exist ... where has he been ...
He doesn't deserve to be a doctor..... how I wish I could give him a slap!!

He knows nothing, but then many of the docs know little about RLS but are willing to learn, that is what makes the difference.

I wonder if it would have helped if you had taken with you a copy of the Mayo Algorithm for RLS, he could hardly have argued with that. Actually it might be a good idea to have a copy of this to refer to yourself as it is very informative and you will be able to discuss RLS much easier.

Might also be helpful if a copy of the Mayo Algorithm was sent to the doc that you visited !!

Not all doctors are like this, and you will find someone. Especially now that Ann has given you a contact name.

In the meantime look at the hints for non pharmaceutical help, try hot showers, cold showers.

I am so angry at this doc ....

Others will be along with advice.

SquirmingSusan · Post by **SquirmingSusan** » Tue Aug 25, 2009 11:31 pm

Oy, what an idiot! It's just amazing that people with so little brains and compassion can get into medical school, let alone graduate and go into practice. :roll:

I'm thinking that a letter to the clinic director might be in order. Just write what you wrote here, and enclose some information in case everyone at that clinic is as clueless as that doctor.

Then call and schedule an appointment with Dr. Rye. As Ann mentioned, he's one of the "big names" in treating RLS, so you should have a better experience with him.

Betty/WV · Post by **Betty/WV** » Tue Aug 25, 2009 11:53 pm

Hi Jessdell: I feel so bad that you went through that bad experience with that doctor. How rude, and unprofessional.
Let me tell you what I did when a similar thing happened to me. I had pulled a muscle in my leg. And I went to the doctor. I, at this time, was just learning about RLS. Although I had had it for years, I really didn't know what was wrong with me. I had done some research and had some printed information on it. In some of the literature I had it said to mention it to your doctor. So I mentioned it to this doctor. He also laughed at me, and said, "where did you hear that? On Oprah Winfrey". I felt horrible and was stunned and could think of nothing to say to him. And there were a couple nurses in the room at the time. And they seemed embarrassed.
I was so furious, I was disgusted. So when I got home, I took all the information about RLS, made copies, highlighted portions. Especially where it mentioned Mayo Clinic, and doctors who were doing research etc. etc. I sent all this to him, marked personal on the envelope, so he would get it personally. And I wrote him a note, telling him how rude, unprofessional, and how much he embarrassed me. And told him I certainly would never come to see him again.
I never expected to hear anymore from him. But weeks later, I received an envelope from him with my check, that I had paid for the office visit. And it was marked VOID>. Not a note apologizing, or anything.
So you have access to the Mayo Clinic Algorithm, If you sent it to him, I would love to be able to see his face when he read it.
And hasn't he seen any of the ads on TV about Requip and Mirapex for the treatment of RLS.
Just put that experience behind you. I hope you get to see the doctor someone mentioned in Atlanta.
Wish you the best, Jessdell. Let us know how you are doing. BETTY/WV

jessdell · Post by **jessdell** » Wed Aug 26, 2009 1:32 am

thank you all so much! I'm definitely going to call him. I'm trying my best not to let a stupid guy keep me from finding some kind of relief. From the way you talk about him, I feel better about Dr. Rye already. Thank you so much for the recommendation.

And Betty/WV, good for you! I wish I'd done that, I was just so embarrassed at the time. I guess it's never too late...

Post by **Polar Bear** » Wed Aug 26, 2009 2:29 am

It is never too late.
I'd do what Betty/WV suggests, send him the info.

Good luck (Betty/NI)

Post by **ViewsAskew** » Wed Aug 26, 2009 3:13 am

jessdell,

OK, I've had the whole day to be mad for you, lol. I see you've had some other lovely people welcome you and share in the indignation.

Whew. What a piece of work. I just don't get how somebody could act that way. As Susan said, you wonder how these people get licenses.

I hope Dr Rye is available and taking patients. He's one of my favorites and I'd definitely have him as my doc if he were close to me. Then again, I like most of the RLS specialists I've met. But, since Dr Rye has RLS, it's like more special, you know? You just know he completely understands you.

I would also agree with Susan that if you are up to it to please send a letter to someone in charge at that doctor's office. He really shouldn't get away with that. It's just not acceptable to treat a patient that way....ever. He may think it's his good ol' boy joking, but it isn't at ALL funny.

Aiken · Post by **Aiken** » Thu Aug 27, 2009 2:55 am

That's just reprehensible. Not just to be wrong, but to belittle a patient. Disgusting. Report him to your state medical board or something. Don't let him get away with it--you know you're not the first or last he'll do it to.

Me, I'd write his office a letter letting them know I was firing him and finding a doctor who didn't get his MD out of a crackerjack box, but I'm obnoxious that way.

Edit: Better yet... I'd go into his office and bet him a month of my pay against a month of his pay that he's wrong. If he's so damned sure RLS doesn't exist, he'll bet you, and you'll win a month of his income with no trouble at all, since there's now plenty of evidence that RLS is entirely real. Get the bet in writing. If he refuses to bet, then that means he's not sure at all, and it's time to point out that doctors who aren't sure of what they're talking about shouldn't be seeing patients.

Cattolico · Post by **Cattolico** » Mon Aug 31, 2009 1:48 pm

jessdell,

Oh brother, what a 'doctor'. Like Aiken, I'd bet him. But first I'd like to belt him. I once saw a similar neurologist. He was arrogant, dismissive, ignorant. I knew more about RLS than he did. He told me it was "probably anxiety". I told him it most definitely was not. And I cancelled the follow-up appointment with him. I reported the incident to my GP, and he gave me a referral to a neurologist who has done research on RLS. Its a 2.5 hour drive, but its worth to see a doctor who won't give me B.S.

Sounds like Dr. Rye is a good one. Good luck with it. And God bless you.

Ed

Neco · Post by **Neco** » Mon Aug 31, 2009 5:10 pm

I am so angry.

That is despicable disgusting behavior. Flat out malpractice.

You HAVE to take action

Find another doctor who will help you immediately.. But do not let this bone head get away with it.

You HAVE to make phone calls and write letters. That guy should be heavily reprimanded for what he just did.. How old was he?

Find out if the clinic is his practice or has a directory/someone above him. And write them a letter detailing his treatment. Secondly, write a letter and/or call your state medical board.

Be as specific as possible, write down everything he said to you, etc. You might even consider asking the local media / newspaper in his area if they are interested in publishing a story about how he treated you.. especially in the political climate we are in now with the debate over public healthcare.

I don't understand why there are no clear laws on this kind of crap.. We should be able to fight back legally when doctors are arrogant like this. At the least people should be able to sue for pain and suffering and recouping expenses of having to find a doctor that actually knows what they're talking about, or getting their money back from the doctor in question..

In fact, you should demand that too.. You went to them for help, and they ridiculed you and didn't helped you, and emotionally traumatized you. They don't deserve a dime.

When you send in these letters make sure to include some printouts of information, maybe a page with web addresses to information sites on RLS. like the RLS foundation, the Mayo Algorithm (link in my signature) and stuff like that.

Just hang in there.. There is light at the end of the tunnel. I was 21 when I got my RLS diagnosis, and I've luckily been seeing the same great doctor for 6 years now. He's helped me through all kinds of problems, depression, IBS, RLS, he worked with me on my opiate addiction when most people would just kick you to the curb and call the cops, but I have really improved my life thanks to him.. A lot of my visits he didn't even charge for because I had no money. I work two jobs, got my GED and license prior to that, and keep my RLS under control with Methadone now.

There are good doctors out there, so don't give up. Many of them do care, you just have to look for them. Sometimes its a hard journey, but the end can be rewarding.

dogeyed · Post by **dogeyed** » Tue Sep 01, 2009 3:54 pm

Dear Jessdell,
Wow, that physician definitely had a poor bedside manner, to say the least. I ditto the idea of going to Emory, fine hospital complex. Here's a government website, it talks not only about your "crawling" feeling that the doc dismissed, but also how it can occur in the upper body:

www.ninds.nih.gov/disorders/restless_le ... s_legs.htm

I remember one time, before I finally got opiod treatment, my whole body jerked so bad that I almost fell out of my chair, and I've read a post by another member here who had the same experience. As for taking benadryl, that's a no-no, it will often make RLS symptoms worse.

I've got the severe kind, goes on all the time and hurts me a lot. Like a lot of painful conditions, outsiders cannot tell you have it. But I myself have actually SEEN it, the muscle fibers in my right calf were rippling just under the skin, a group of them pulsing and wiggling in different sequences. So, in me anyway, it can sometimes be visible to anyone who has eyes.

RLS untreated can also drive a person crazy. I recall reading about a wife whose husband went around the bend on account of it. I had a similar experience with my RLS, I didn't know what it was. I got lucky, my general doc pegged it right off the bat, when I finally came in to "confess" about this strange thing going on in my legs for the previous months and months. I too felt I should be able to handle it, it was kind of a private matter for me, until I couldn't think straight for a while there, due to the pain and lack of sleep.

Anyhow, glad you came to this website, we all know exactly how wronged you were by that insensitive and un-edu-bi-cated doctor. You were victimized, to be sure. Many people here have had to fight hard to get the relief we so desperately need. Oh, and I identified with you saying "hitting" to describe your RLS, cuz I used to hit my legs too, wishing I could cut them off, which others have used those kinds of self-destruct terms too. PLEEEZ go to Emory, the relief you will feel when you get the right medicines is as indescribable as the RLS itself.
GG

moonlight · Post by **moonlight** » Wed Sep 02, 2009 6:27 am

Hi jessdell (((((hugs))))) what a horrid experiance to go thru...i agree with the others plese dont let this ignorant doctor get away with the way he treated you.
There is treatment which will help you and give you a better quality of life ....go see this other doctor and get the help you deserve....but deffo report that other one he has no right to to practice
good luck
huggles moonlight xxx

jessdell · Post by **jessdell** » Thu Sep 03, 2009 4:51 am

thanks everyone! I really appreciate the advice. I'm driving home from college this weekend and I'm definitely going to get a copy of the mayo algorithm and a couple other pages of research specifically making reference to "RLS in the trunk" and the "creeping, crawling feeling," which I will then send him as a not-so-friendly reminder that he is completely ignorant on the subject. As for his age, not exactly sure, but he definitely looks to be nearing retirement, so perhaps he just doesn't care anymore.

It still angers me to see how many other people have had problems with doctors. I'd like to think it was less common, but I guess unfortunately it isn't. I'm hoping to be able to get an appointment with Dr. Rye soon.

Oh, and as someone mentioned the feeling of wanting to "cut your legs off" I completely relate there. I've said that to my boyfriend so many times when I get especially frustrated with my RLS. I'm sure it wouldn't really be a good solution, but geez sometimes it just seems totally unbearable!

Post by **ViewsAskew** » Thu Sep 03, 2009 7:10 am

jessdell wrote:
It still angers me to see how many other people have had problems with doctors. I'd like to think it was less common, but I guess unfortunately it isn't. I'm hoping to be able to get an appointment with Dr. Rye soon.

I've been a member here for quite a few years, now. Each time I hear these stories I just sit here and shake my head. You'd think it would be better....and it probably is. We do hear the worst of the worst here and not all the good stories. But, it's still mind boggling that it happens at all.

My goal is for all of us to get the treatment we need along with the respect and care we deserve.