Doctor-Honest Opinion

For everything and anything else not covered in the other WED/RLS sections.
Sleuth
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Postby Sleuth » Thu Dec 24, 2009 7:47 pm

Thank all of you so much. I was afraid to come back because I was embarrassed.

I've been stranded for so long with my feelings that I forget that you all have walked more than a mile in my shoes.

I will see what this psychiatrist has to say. When you think about it, I bet that doctor I was seeing doesn't know much more than he does. My last psychiatrist refused to have any communication with any other doctor or read any of the information I gave him which is one of the reasons I changed psychiatrists.

Well, I wish you all a wonderful holiday.

Thank you so much for reaching out to me. It means more, so much more, than I could ever say.

Dale

Polar Bear
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Postby Polar Bear » Thu Dec 24, 2009 9:16 pm

If your psych is willing to take heed of the Mayo Algorithm and follow the advice then you may get the help you need despite his not being an rls expert.

Actually, what is an rls expert ???
Someone who is helpful and willing is a godsend.

Please don't feel embarrassed ... there is no need.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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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Aiken
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Postby Aiken » Sat Dec 26, 2009 8:38 am

I agree. Helpful and willing is great. Heck, I think half of the people whom we consider experts are experts because they were willing to listen to us in order to learn how to treat us.

Any one of us could end up helping to train the next expert. :)
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.

Sleuth
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Postby Sleuth » Sat Dec 26, 2009 1:29 pm

This last doctor I was seeing didn't want me to read these boards. She thought it was a bunch of misinformation.

I wonder if she gets some sort of grant for each patient. That might be why she kept me on as a "patient" while doing nothing.

Dale
Last edited by Sleuth on Sat Dec 26, 2009 1:34 pm, edited 1 time in total.

Sleuth
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Postby Sleuth » Sat Dec 26, 2009 1:34 pm

Aha, I just found a grant she was awarded this February. What does this have to do with RLS?

The Foundation's Harold Amos Medical Faculty Development Program was designed to provide four-year postdoctoral research awards offered to historically disadvantaged physicians who are committed to developing careers in academic medicine, to improving the health of underserved populations, and to furthering the understanding and elimination of health disparities. Under this grant, Dr. Ana C. Krieger will investigate potential mechanisms of endothelial cell dysfunction associated with increased vascular thrombosis in subjects with sleep apnea. The specific hypothesis is that sleep apnea leads to altered ecto-nucleotidase activity in lymphocytes. Due to the severity of vascular outcomes linked to sleep apnea, the elucidation of the underlying dysfunction as it relates to endothelial cells, platelet function and aggregation is a necessary prerequisite to the development of therapeutic protocols capable of attenuating the disease process.

ViewsAskew
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Postby ViewsAskew » Sat Dec 26, 2009 9:16 pm

It's not about RLS in any way; I can't see how it could have influenced her.
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.

doety
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Experts

Postby doety » Tue Dec 29, 2009 4:08 pm

When we talk about "experts"--I think we need to understand that these doctors don't know any more than we do. (Well, that was kind of a sweeping statement...). WE are often the experts because we spend a lot of time on the Internet looking for what's being tried, what people think works, etc. Obviously this is being taught in medical schools now, thank goodness. The doctors we have to find are the ones willing to try various drugs, are not afraid we're going to get addicted, and are willing to let us stay in touch. But what can make them expert in RLS, in my opinion, is their ability to look at our individual situation with fresh eyes. They can bring perspective that we lost long ago because we're sleep-deprived.
I've had such amazing luck in finding docs in Denver, with Kaiser. I've never had one refuse to prescribe something. The problem is that there is no drug that cures this crap. From 16 years experience with trying everything, I believe it's like a shell game. Is the good pill here? Here? What about here? Sometimes, if we're lucky, we find something that works for a while.
When I first tried Mirapex, I got headaches and various other things, but I had been told to expect that so I stuck with it, and it gave me relief for two years (that I would still dream about if I could go to sleep...). Now I'm back to looking under the shells.
Be sure and keep a list of everything you've tried, how long you tried it, what happened. See which category they fit under (opiate, etc.) so you can see if there's a pattern. I don't agree that you should stop the anti-depressant you were prescribed (I'm sure you've seen the list of those antidepressants that make RLS worse) -- they may help you calm down and make good decisions. A new doc just told me he knew I was depressed because I wasn't getting any sleep, but nevertheless, I was depressed and he felt like that should be treated.
I wish you luck in finding a doc willing to walk the road with you.

Polar Bear
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Postby Polar Bear » Tue Dec 29, 2009 7:36 pm

Compared to other members on this site I know very very little about the pharmaceutical medications, in particular the opiates, apart from what I have used myself which is requip and tramadol. But I know plenty about the symptoms, the distress and the non pharm stuff.

And even considering how little I know med wise, it still makes me way ahead of any of the doctors that I have consulted with regards to treatment.

The reason for that is the Mayo Algorithm.... the rls bible.
My doc says that when a patient attends with any type of symptom he would expect that they have been googling and to have questions to ask that would not have arisen pre internet.

A more questioning patient will surely eventually lead to more interaction with regard to symptoms and treatment rather than a doc just handing out a script, as it would have been years ago when the ordinary guy held a medical doctor in awe and would not have thought of questioning a treatment.

My doc has told me he is happy for me to google and to question, and to provide information that I have had time to research, whereas he does not have the luxury of this research time.

On one occasion, it was when I was asking to try tramadol, I referred the doc to the Southern California Site and to the meds that are recommended and not recommended. He actually phoned me whilst sitting at his computer cos it was taking him time to locate and thus we both sat, he at his computer, me at mine, and discussed on the telephone the content of the relevant advice, following which he prescribed the tramadol.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

dogeyed
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Postby dogeyed » Fri Jan 01, 2010 11:50 am

Dear Dale the Sleuth,
I like what someone else said here, about letting the new psychiatrist handle your RLS stuff for you. Just that he would offer, means he is familiar with the syndromer. As I've told you before, it was my regular family doc who diagnosed it on the spot and gave me opiates.

About the psychiatrist helping with RLS, which may seem farfetched, let me tell you this story. I remember one time years ago, an old back injury got much worse, and is in fact what triggered my RLS and other cascading symptoms. I had gone to an orthopedist specialist, and he acted like nothing was wrong with me, and same thing with my clinic docs. Keep in mind that my X-rays are scary. Well, I've had a psychiatrist, too, for many years, she knows me very well, and I began crying with her about how nobody listened to me about my back hurting again, and, do you know my psychiatrist gave me a nerve pain medicine that stopped my back pain. Later, when I started getting back in with a neurologist who first confirmed diagnosis of RLS, he took over that medication prescription for me. It's not as good for RLS, it was just a back thing at that time, but it was the anti-seizure stuff Lyrica.

I tell you this because could be this psychiatrist is perfectly capable of giving you drugs that might help, and since he offered, grab hold of that golden ring. So, I think when you see him next time, you should give him a chance to work with you on finding the medicines for RLS that will help you. He may not give opiates right off the bat, but just go along with the program and see how things go, and if something doesn't work, tell him on your return visits, since I assume you will see him reguolarly.

Eventually you two will come to agreement on what works. Also, seems like Dr. Early had supposedly recommended some opiates at one time, so if you can find those papers, bring them or have them forwarded to this psychiatrist, along with the RLS algorithm from this website. But do not ask for anything in particular; rather let this doctor be in control.

I wanted to also say something about you being depressed. This psychiatrist is your savior on this issue, since he is doing due diligence on the matter by gathering all your info. He will listen to you and help you out with all your personal issues, I hope in a regular way, and help you better handle the stressors in your life right now. And if you will let him help you with the RLS, why, your physical pain will get treated, too.

Hope is sometimes elusive when you're all the way down that dark hole of depression. But with time, talk, and medication, you'll get a better handle on it. And to me, too, half the battle is getting this RLS under control, becuz it ruins sleep, it distracts a person and makes them frustrated and angry, wrecks your mood and makes it virtually impossible to enjoy regular stuff anymore. And this is on top of your personal problems that this new psychiatrist will hopefully help sort out for you. Well, let us know how things go.
GG
P.S. Don't worry about your extra weight, it'll come off when you start feeling better, both mentally and physically, and perhaps in springtime you'll feel more like going on little walks outside, and that'll make the pounds drop off naturally.
"It's not how old you are; it's how awful you feel."

Sleuth
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Location: New York City

Postby Sleuth » Sat Jan 02, 2010 11:35 am

Dogeyed,

I saw the psychiatrist on Thursday. BTW, he is a psychopharmacologist, which means there is no talk therapy. He merely prescribes medication. He is outrageously expensive at $300 per half hour. Anyway, this is how this meeting went.

First off, he wanted to deal with the RLS, even though he doesn't know much about it. (I had to tell him at my first visit that it can spread to your arms. He was surprised to hear that.) He looked at the notes of the last RLS doctor I saw. She said I stopped the Gabapentin because of constipation, which is not true. I stopped because of the swelling in my hands and feet. Anyway, he thought I should take that again. I told him that it was important to take the medication before the onset of symptoms (which this last RLS doctor told me). I told him that my symptoms start at a different time each day. He said that I should just take the medication at any time of the day. OK?

He than prescribed Lexapro as an anti-depressant. I asked him particular questions about certain side effects. He said "no" to each one other than weight gain. In particular, I asked if it would cause insomnia, which is a common side effect of certain anti-depressants. He said "no." Insomnia is one of the first side effects listed online. Okey dokey.

I then asked if it was wise to start two new medications at the same time. If there are problems, how will we know which one is causing them. He thought about that and agreed. Give me a giant break. That is medication 101.

He made me wait a month for an appointment after the initial consultation even though I was in a lot of distress. I didn't like that from the start. At this appointment, he hadn't gathered the records he said he would and he had not thought about which medication to give me. At one point, he suggested I go back on the MAOI I was taking before. I said it stopped working, so why would I want to go back on it. You also cannot mix MAOIs with many drugs so I would be severely limited in any RLS meds I could take. He threw out some drugs names to me and then said he had samples of Lexapro, so he would give me that.

On his wall, he has covers of New York Magazine for four years. These are the ones that list the best doctors in New York City. On the way out, I asked if he was on those lists. He told me he was not, but that it looked good and nobody but me had asked if he was on the list(s).

Since that visit, I have been even more depressed. I feel as though these doctors don't think they can help me, so feel no sense of urgency or whatever. I get no feeling of caring for me as a human being who is suffering. Maybe it is because of my age. One psychiatrist I called said he doesn't see patients over 65 (I will be 67 this month).

So, folks, all in all, in New York City, where all the supposed best doctors are, I am without any medical help even though I am paying through the nose. Something is not right here.

Through all this, my RLS has just gotten worse. I am despondent. It's 6:30 am and my RLS has started already. The thought of getting through a whole day with RLS symptoms is more than I can bear.

Dale

Polar Bear
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Postby Polar Bear » Sat Jan 02, 2010 7:23 pm

Hi Sleuth

The cost of the consultation is about the same as here in the UK if we were to make a private appointment i.e. not through our healthcare system.

When I read of your costs, and also in another thread the cost of some of the meds/tests, I have to be grateful that over here we pay a flat rate of £3 per script, and as I am 60 yrs all scripts are now free.

This psychopharmacologist certainly does not appear to have been in any way prepared for your appointment, either in a general fashion, or with regard to rls. Actually it sounds like he was pretty vague all round. I would have been jumping mad.

Hard to make out who was helping who??

Was this a 'one of' appointment or will you be attending him on a regular basis, and did you take the Mayo Clinic Algorithm to give a direction meds.

No way could I afford to pay the sort of fees and costs that have been mentioned recently. But I do wish I could afford to pay for private health care to supplement our healthcare system, simply as a way to speed specialist treatment if required.

Sorry you are having such continuous symptoms along with your ongoing other issues.

Have you gotten back onto an even keel with your primary doc.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sleuth
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Location: New York City

Postby Sleuth » Sun Jan 03, 2010 3:25 am

I have no primary doctor for RLS. She is the one who prescribed meds and then ignores me. I can't work with a doctor who does that.

I am spending my savings on these doctors bills. That is why I'm so upset. It is like taking money and flushing it down the toilet.

I didn't go to this doctor for RLS. I went to him for depression. He doesn't even seem able to handle that. I was told by a number of doctors, including Dr. B, to take care of the depression first and then handle the RLS.

We pay the highest doctor fees here in New York City. Everything here is expensive, which is one reason I would love to leave.

Dale

runkrun
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Postby runkrun » Sun Jan 03, 2010 1:37 pm

Sleuth, I've been reading through all your posts this a.m. I'm so sorry that you are so miserable! I truly can relate! Can you get back in the physicians office that you started with? Ask her straight out to prescribe an opiate. Even though you seem to be leary in starting these meds, they truly are life savers! I started them 3 yrs ago, after 8 yrs of trying numerous medications. All I can I say is aahhh! They really do work. I use Lyrica(another lifesaver) Xanax for sleep, and Oxycodone. You may need to start slowly and titrate up to relieve symptoms. I don't think all is lost w/ your previous physician. Office visits are definately a better way of communication than an email. I'll remember you in my prayers! Good Luck!

Polar Bear
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Postby Polar Bear » Sun Jan 03, 2010 4:05 pm

I agree with runkrun, what about asking your GP straight out for an opiate, tramadol is what has made the difference for me, topping up my requip, and a face-to-face appointment is so much better than email in which the tone can be misread.

Most people are wary of trying a different med, I would take anything for relief - but this is just my personal opinion.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sleuth
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Joined: Sun Jul 08, 2007 5:39 am
Location: New York City

Postby Sleuth » Sun Jan 03, 2010 7:17 pm

This the second nasty email exchange we've had. I don't think I can go back to her. I also don't like that she ignores me after she prescribes a med. If I have a problem, I have nowhere to turn.

The last two meds she mentioned were tawil and pregabatin. I never heard of them. I couldn't find them on the Net, so I sent her an email telling her I never heard of them and asked what they were. I didn't hear from her for four days so sent an email once again telling her I didn't think that was very nice. That was 2 weeks ago and, as I knew, I haven't heard anything from her.

Right now, I want to scream. The RLS is the worse it has ever been. It has been getting worse and worse the past few weeks. I have been under even more stress than normal. I won't go into my personal problems, but recent events have accerbated the RLS tremendously.

Dale


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