New Neuro Dr.

rlsgirl · Post by **rlsgirl** » Fri Oct 16, 2009 7:43 pm

As many of you already know, I have been taking Subutex for almost a year now and have wonderful results from it. The Specialist I'm getting it from wanted me to see another Neuro Dr. that would follow me in this adventure of using this medication as an "off label" use for RLS.

Well I went to this Dr. and OMG what a freaking jerk. He was the norm Neuro Dr. Why are you taking that? Why were you taking pain meds before? RLS is not a pain condition its a sleep disorder! I know nothing about Subutex! I can not endorse you taking a medication I know nothing about! So of course I had print outs on it and the RLS paperwork from Zach. The man did not care that I even had anything to educate him on the medication used for RLS and or why this medication would work for me. He did a quick exam and said I guess just come back to see me in Dec and in the mean time I will get copies of your medical charts to review your condition. Then he walked out of the room did not say kiss my butt, good by, nice to meet you, NOTHING just walked out!

WHat is it with these DRS? Its like if they don't know about it they don't even want to hear about it! I'm going to go back to him in Dec. just to see what he has to say and to ask him if he used the material I gave him to educated himself and if he has not or gives me the cold act like he did i"m going to report this man!

I"m SO SO sick of dealing with this stuff! I'm seeing that my husband even seems to have his wheels turning. He asked me after I got done complaining about this dr. why I keep jumping from one dr to another? he said maybe that is what the problem is maybe the Drs. feel like you are seeking out medication. No matter how much I even explain it to my family they don't even understand. I don't feel like I know anyone who freaking understands what it feels like to have and deal with this condition. One would think that when you state to a Dr. that your legs feel like a 9volt battery is hooked to them and they hurt with that feeling sometimes getting so bad its in my arms taht he would see the big picture here!

He won't though. I can almost promise you I will go back in Dec. and he will not agree to back this dr. in giving me this medication. THen I will be back to square one again! There are NO drs. around here that will touch anything other than the norm pain killers. I CAN'T TAKE THEM! They stop working for me way to quick then I end up having to eat them for them to work at all.

I'm just so frustrated with all of this. Has anyone ever heard of Vistaril? He actually gave me a script for that to see if I have any anxiety that may be causing my legs to do what they do! He thinks its strange that none of the normal meds that work for some do not work and that all that I have been on has not worked except for what I'm taking right now.

I don't know what I will do if they take me off of this medication. I stopped taking it for 2 weeks a few months ago to see what my legs would do and they went right back to it. I took 1mg of Subutex and within 3 seconds they stopped. This medication is just unreal to me. I actually believe that I will find myself getting some other way that is not legal. I do not want to live anymore if I have to deal with this condition EVERYDAY of my life! Its just to much for me to handle. I'm only 36 years old and this condition turned me into an old woman. anytime you have a condition that keeps you from sleeping at night and the only way you can make it through a days worth of working is to sleep in your vehicle during your hour lunch break and then take a nap after work in your car before you drive home where you end up going back to sleep as soon as you sit down when you get home; its time for these drs. to wake the hell up and keep us on the medications that do work for us.

I was so sick last year from all of this stuff and could not get out of bed long enough to see my daughter drive away in a vehicle for the first time alone. She got her drivers license on a Sun and I was in bed so sick and tired that I could not even get out of the bed to watch her drive off!

It just makes me sick and I'm over it ALL!

Thats all for now. I just needed to vent or explode! Sorry!

Sleuth · Post by **Sleuth** » Fri Oct 16, 2009 8:04 pm

Don't be sorry.

This is a hard illness to bear.

If you have to let off steam, what the heck.

Dale

Post by **Polar Bear** » Fri Oct 16, 2009 8:55 pm

I can just feel your frustration. i am so sorry the neurologist turned out to be such a ......*&*&*&........ can't actually print what comes to mind.

Neco · Post by **Neco** » Fri Oct 16, 2009 10:07 pm

Wow... that sucks. However the lack of knowledge about Subutex aside, his attitude towards opiates for RLS is appalling.

It seems I am saying this a lot lately, but you need to find out who this Neuro's boss is and write them a letter about he he treated you. Write your state medical board as well, and at least demand he be made to give you an apology for his rudeness.

This sucks... don't give up hope. Don't. Most importantly, contact your prescribing physician immediately and tell him what happened and how you were treated.

rlsgirl · Post by **rlsgirl** » Sat Oct 17, 2009 12:37 am

I actually told the specialist that has me on the subutex about my appt with him and he wants me to wait to see what he has to say in Dec. I have already written a letter to his big dog about him in the event that he acts the way that I think he is going to. I hate to say this but when i walked into his office and saw that he was Asian I knew how it was going to end. I have NEVER had a good experience with any Asian dr. for anything.

what is so frustrating is the fact that I tell them, and I show them what medications are being used to treat this condition. i tell them that the medication i'm on is similar to methadone and OMG its like they look at you like your looking to get high! Even when I was taking pain meds and became dependent on them I NEVER took them for a high! Not one time did I ever take them because they made me feel good. I have a good life with a great husband and I don't need crap like that to feel good. i was taking them and alot of them to get rid of my rls! These people just don't understand what its like to hurt like that and not be able to sleep and still have to function in your everyday life!

I told this dr. that I will not go without this medication and if I have to then its not even worth me living anymore if I can't be on something that will give me the life that I'm use to living. He then asked me if I have ever been on medication for anxiety. when I told him yes but did not need it because I don't have an issue with anxiety he in return told me that the way I was talking showed him that I had quite a bit of it and he wrote me a script for Vistaril! LOL

I just hate being this way and I hate having to worry when its going to be that they don't give it to me anymore. The dr. that is giving it to me understands that it helps me and has no issues keeping me on it but he needs a neuro dr. to back him with him giving it to me as an off label use for my legs.

I can't just keep taking off of work all of the time to jump around to neuro dr. after neuro dr. looking for one who will support me in this. Not only does it hurt me at work but it makes me look like I'm fishing for medications!

I just hate it thats all!

Post by **Polar Bear** » Sat Oct 17, 2009 3:22 am

A couple of years ago I was taking requip only for rls and my doc referred me to a neurologist. On occasion my own gp had prescribed me codeine 15mg and only for occasional use. and then I asked if I could have the coldeine as a back up. My symptoms were only very partially under control.

To speed up the process I paid privately to see him £130. When he asked my symtpms I told him I had rls. He said he would decide if I had rls. After 30 minutes of checking if different parts of my body responded to certain touches, and confirming that I could walk a straight line, he said - yes, you have rls. He said he did not know a lot about it whereupon I produced the Mayo Clinic Algorithm which he looked at, he said that my gp and I appeared to be dealing with the situation satisfactorily, that I was well informed, and we should continue (gp and myself) to work together.

I felt I wasted £130, except that he agreed that codeine was ok to be prescribed. I felt that perhaps my GP had been seeking approval for prescribing the codeine, and it also made me feel more reassured in that when I came to a certain point, which I did, I asked doc for tramadol and he gave it to me. Got a talk about not taking too much etc. etc. but in a good/nice way, as he understands quality of life is something to strive for.

I dread my gp moving on, and me having to start a new relationship of 'understanding'. To have the tramadol taken away would destroy me.

SquirmingSusan · Post by **SquirmingSusan** » Sat Oct 17, 2009 4:28 am

RLSgirl, that is horrible how you were treated. Hearing about some of these doctors just makes me want to scream. And then he prescribed Vistaril! What an idiot. If he knew ANYTHING about RLS, he would have known NOT to prescribe a sedating antihistamine like Vistaril. If you do write that complaint letter, be sure and put that little tidbit in there.

Neco · Post by **Neco** » Sat Oct 17, 2009 5:21 am

If its possible for you to go see Dr. B ask your doctor is he would comprimise and accept a recommendation to keep on your current treatment from Dr. B instead..

Make sure you explain he is an RLS expert, has been working with RLS patients for over 20 years, from a wide range of age groups, and is very knowledgeable about which medications work and which don't..

I know Dr. B is a stickler for supporting research that has been "rigorously" proven, but at the same time, maybe its worth a shot to first, ask if your doctor would accept an endorsement from him, if you can get out to Cali to see him. Then, write Dr. B an email explaining your situation, and give a brief explanation about Suboxone (though I'm sure he knows what it is) and its similarity of use to Methadone (which I think you said didn't work very well for you?) and tell him how this other Neuro treated you and what he said about RLS not being "painful" and then how he prescribed a potentially big RLS antagonist to you instead.

And end it with a polite request for a consultation if you can arrange the trip.

Failing that, if you can get into Mayo or anywhere else, ask your Dr. if he would take an endorsement from one of them if they will sign off on it.. Although Dr. B is probably your best first bet, as you can actually talk to him thru e-mail before worrying about finding/wasting money to get out to see him.

rlsgirl · Post by **rlsgirl** » Sat Oct 17, 2009 9:49 pm

I have actually never been on methadone. I asked at one point to try it and that (I believe) started to throw red flags to the other Dr. I was going to. he completely shut me down with any further conversations about methadone. So bad that I NEVER talked about it again in fear that he would not give me anything for it!

I actually live in VA. I would love to be able to fly out to CA to see this dr. but I don't see it taking place anytime soon.

Does anyone have his email address? If so i will email him my history and what I'm doing now to see what his take is on it. I've been to every dr around here that is suppose to know about RLS and none of them seem to really know anything about it. They say that they do but I can tell that they really do NOT!

rlsgirl · Post by **rlsgirl** » Sat Oct 17, 2009 9:51 pm

SquirmingSusan wrote:RLSgirl, that is horrible how you were treated. Hearing about some of these doctors just makes me want to scream. And then he prescribed Vistaril! What an idiot. If he knew ANYTHING about RLS, he would have known NOT to prescribe a sedating antihistamine like Vistaril. If you do write that complaint letter, be sure and put that little tidbit in there.

Susan.....I actually tried vistaril about a year ago. 1 25mg tab set me up the wall for 4 straight days with my legs. When I told this dr that he looked at me like I was out of my mind! LOL This is the response I get from all of the drs that I see. its as if they do not believe what people say they feel with rls~!

Neco · Post by **Neco** » Sat Oct 17, 2009 9:58 pm

There is hope yet..

Since you are in VA, you are very close to Johns Hopkins, and they have some good RLS people there I believe. I don't have a lot of info about them, but I think Ann or someone else might.

I don't know the track record with regards to Hopkins and what you would get out of it as far as a good conlsultation, or endorsement of Suboxone or at least Methadone, but hopefully someone here can fill in the blanks.

Dr. B's email listed on rlshelp.org is somno@verizon.net so I believe that is the current one. Someone will correct me if not..

I hope everything works out for you though.. going from Suboxone to Methadone will probably be a little difficult (I know you have to be in withdrawal to start Suboxone, but I'm not sure about going from Suboxone -> Methadone) hopefully you won't have to endure a medication change, and the whole cycle of finding the right dose.

SquirmingSusan · Post by **SquirmingSusan** » Sat Oct 17, 2009 10:53 pm

Well if you need to see one of the "big names" in RLS treatment, Dr. B seems to be the easiest to get in to see. I'm flying out to see him on the 28th, and got $120 round trip airfare from St. Paul. But I'll take any excuse to go to California.

Seriously, you might want to give up the battle with these neurologists who don't know a thing about RLS, but won't listen to you. I haven't had a great experience with a neurologist yet, no matter what the ethnicity; jerk doctors seem to come in all varieties. :roll:

I'm going to list some of the specialists from memory, and hopefully if I get the details wrong someone will correct the information: Dr. Earley at John's Hopkins (Baltimore?), Dr. Rye at Emory (Atlanta?), Dr. Silber at Mayo Clinic in Rochester, MN, Dr. Buchfuhrer (Dr. B) in LA.

My case is similar, in that I go to a pain clinic, and the pain doctors really don't know much about RLS. So while they are OK with prescribing methadone for my painful RLS, they don't get why RLS is painful, and why methadone would work for it. They also can't help me with the PLMD which rocks my body when I'm resting so that I can't get good sleep. So they've been pushing me to see a sleep doctor, even though it was a sleep clinic who sent me to the pain clinic because they didn't want to prescribe opioids... My pain doctor has agreed to work with Dr. B.

We do what we have to do.

rlsgirl · Post by **rlsgirl** » Sun Oct 18, 2009 3:30 am

I will look into a dr. at Hopkins. I didn't even give that a thought. Maybe I will get lucky there with this situation. I just don't understand why these drs. don't listen to what the PT is saying.

I hope your visit to Dr. B goes well. What are you looking to do as far as seeing him and continuing to see your current dr? ARe they just going to correspond on your treatment?

Thanks for the info from both of you I really appreciate it!

Sleuth · Post by **Sleuth** » Sun Oct 18, 2009 9:23 am

I saw Dr. Earley at John's Hopkins this past July. He seems very informed and is very nice. However, I am not sure about the follow up. You might ask his office before you go there.

I haven't seen the doctor here who is "treating" me for RLS since my visit with him, so can't say for sure. I am seeing her tomorrow, so will have a better idea of what communication there has been between the two of them.

Dale

SquirmingSusan · Post by **SquirmingSusan** » Sun Oct 18, 2009 7:44 pm

I'm hoping that Dr. B will be able to influence my pain doctor a bit, as far as helping me with actual sleep issues. The pain clinic gives me the prescription for methadone, and also for Provigil. But they really don't know anything about sleep meds. My pain doc said he is willing to consult with Dr. B on my treatment. We'll see.