Dealing with doctor

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Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Dealing with doctor

Post by Bedbboc »

I hope this is an appropriate space to post this topic. It is long so please bear with me.

I’m new, joined about a week ago. I’ve been diagnosed with RLS for nearly 28 years, on sinemet (S) and mirapex (M). I’ve been seeing the same neurologist, Dr I, not sleep specialist for 16 years who has been overseeing my care. She never mentioned side effects except antagonists or rebound. She asked if I felt a compulsive desire to gamble or have sex about once a year, neither was an issue for me. I did not research as I should have.

I was referred to an RLS specialist twice, Dr G. The first time he directed me to take two weeks off of M and S with out any titrations or other meds. I was miserable but I did it and when I resumed M and S it worked better. The second time was last week, 6/18.

He began by saying I was taking too high a dose of both M and S, which he prescribed 5 years ago. He said several times that I should stop taking both and try opiates. He did not tell me that opiates are approved for RLS. I thought he was saying my symptoms were considered pain.

I asked him why opiates. He said if I talk again he will hang up. I said “ I thought this was to be a conversation? I will aquifers to you now”

He spoke of methadone and oxy and asked me to choose. I asked if I could speak now. I realize this made him angry. I had no idea which to choose. I chose methadone because in my very limited understanding it seemed maybe less addictive? I said he had mentioned that the dopamine was “ very bad” more than once, aside from augmentation was there other concerns. He said no.
He never mentioned side effects such as hypotension ( my blood pressure is very low, 90/30 or even 20 on the bottom). He never mentioned kidney disease or any other side effects.

I picked up 11, 5 mg methadone tablets from pharmacy that same day. I stopped M and S dopamine drugs. Instructions were take one half tablet in afternoon ( 2.5 mg) and one tablet (5mg) every 12 hours. A bit confusing but the after care note said one half in afternoon and one Half to one Tablet at bedtime.

Thursday and Friday I took one half in afternoon and and one half at bedtime, total of 5 mg a day. I woke 3-4 times during the night due to leg movement. Saturday I took one half and one tablet at bedtime, total 7.5 a day. I was not awakened by leg movements but was too sleepy. Sunday I returned to one half afternoon and one half a tab at bedtime.

Friday I made an appointment to see another Kaiser sleep specialist., scheduled for July 1, 20.

Monday, 6/22, I messaged Dr G the above, I said it was helping a lot. I said I had learned more about mirapex side effects and no longer want to resume mirapex. I told him I had 6 and a half tablets left. I asked him to refill the Px because I did not have enough for two weeks.

Tuesday, 6/23, Dr Ge messaged the following:
“ Methadone is not to take so much. It is habit forming and is going to have long term side effects. I would not recommend going above 5 mg at night. You should go back on mirapex. That was the plan.using Methadone long term has major side effects”

I did not understand I messaged him that evening :
I am taking methadone exactly as prescribed. It is helping. Thank you

Wednesday is nurse called at 10 am and said Dr G wants to know what you meant.i said I did not understand his message either. I meant only what I said.

Nurse said with emphasis, “ Dr G prescribed thirty tablets, why do you have 6 left. I said I received 11 tablets. She started to say
“ No”...then apparently saw in chart and said “ They gave you 11 tablets, why”; I DONT KNOW.

I called pharmacy and there is a kaiser protocol to give few controlled substance meds to “ naive” patients who have never before used C S medications. I asked why I wasn’t informed. She said I was, then looked at info and said I was supposed to have been told but wasn’t told. Dr G was not aware of this policy, he is a Kaiser doctor? He might have asked why the numbers did not add up before concluding that I took 24 pills in four days.

Pharmacist told Dr G who released the rest of the medication but did not apologize or admit mistake on his part.

Sorry so long.

Questions:
Should I explain Dr Gs behavior to new Kaiser doc?
Have I been stigmatized. Shoul I ask Dr G to clear it up.
Should I just find a doc outside of Kaiser? Dr Buchfuhrer perhaps?

I need help. I have been taking methadone for one week and already these problems. Should I reconsider opiate use altogether and what instead. I cannot tolerate neorintin. :shock:

ViewsAskew
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Location: Los Angeles

Re: Dealing with doctor

Post by ViewsAskew »

I think a lot of us have issues taking opioids. I still have problems occasionally and I've been doing it for 15 years. My skin is a little thicker now, and I know more, so I can make better decisions.

Only you can decide. If it were me, I think I'd just keep trying to come to a good understanding with the docs you have. I don't think you've been stigmatized - they realized this wasn't your mistake, even if they didn't apologize.

If I were starting over and were at the place you are, I would want to do the following.

1. Find out serum ferritin. If below 100, I'd want an iron infusion.

2. Stop the methadone in 2 to 4 weeks and see how bad symptoms are.

3. If you haven't, try one of the gabapentin drugs.

4. If you have tried gabapentin, and the iron infusion doesn't help or isn't allowed, then I would likely stay on methadone, doing all I could to keep the dose low.

More than anything, allow 2-3 months to stabilize. Then you can look at next steps. But, this is just me!
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.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Dealing with doctor

Post by stjohnh »

I mostly agree with Ann, except I wouldn't go back to Dr. G. He is clearly so full of himself he can't relate to patients, even though his advice sounded sort of OK (not good, but OK). It is difficult for many to get the opioids and/or good advice about opioids. I have been blessed not to have to take them for my severe RLS, I got IV Iron infusions which work wonderfully for me before my RLS progressed to that point. Unfortunately, IV iron doesn't work for a substantial number of RLS patients, and to date, the only real alternative for severe RLS is opioids. Combinations of lower doses of several RLS meds can work well for some people, but determining a good combination of meds, doses, and timing is difficult and many docs don't have the knowledge or time to really help in this way.

I did spend several years on dopamine agonists and augmented on Mirapex, a really horrendous spell of my life, so except for the difficulty using opioids, I do have a fairly good idea of what you are suffering with.

Happily, the problems associated with severe opioid restriction have started to become apparent and some docs and pharmacists have recognized that it is inappropriate to try and get all patients off opioids. Unfortunately, most don't realize that opioid treatment of severe RLS is quite different from treatment of chronic pain.
Blessings,
Holland

ViewsAskew
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Re: Dealing with doctor

Post by ViewsAskew »

The reason I'd stay with the doc - for now - is that there are so many factors up in the air. It's hard to advocate for yourself when all of this is going on. Once things are stable, then you can see what is going on. It's SO hard to find a good doc who is local - many of us happily work with one who is local if they are arrogant as long as they are OK. It would be expensive to see Dr. B - and time consuming. But, again, that is me and what would be important to me.
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.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: Dealing with doctor

Post by Bedbboc »

Thanks to you both. I have a lot to learn.

St.johnh- funny that is my pen name - St. John. My ferritin is about fifty. That’s all I really wanted from the recent visit with Dr G. He is opposed to my getting iviron. I could try oral again. I am fairly certain it caused stomach problems that improved when I stopped. But considering the possibility that is was the dopamine meds- in part. I might try again. The oral iron worked for years although I was also taking sinemet and mirapex. ???


VA,
I don’t mind the expense of Dr B and it’s only a 40 minute drive. My concern is that going outside of kaiser might appear to be drug seeking. It’s a world I have not yet learned to navigate. I might cancel the appointment with Dr B. I cannot/ will not work with Dr G.

I could however get a 2nd opinion from another Kaiser doctor. One of the problems is that although Dr G was opposed to resuming mirapex initially, on the phone call. He decided I should return to mirapex when he assumed I had taken 25 mg of methadone a day, due to his and Px error. I don’t know if a 2nd Kaiser doc will decide not to contradict him? After 30 years I don’t want to resume mirapex.

I would prefer that all my meds are filled by Kaiser docs for safety.

If I do see another Kaiser doc should I tell him about Dr Gs having jumped to that conclusion. His nurse informed me that he did believe I had taken almost 30 methadone in 4 days. What a mess.


Thanks
Bedbboc

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Dealing with doctor

Post by ViewsAskew »

Well, since Dr G won't consider IV iron, I would likely change my opinion. Not sure how you get your insurance, but if through an employer, you can switch, I'd guess. You may not want to, however.

It isn't drug seeking if the doctor you are currently seeing will not consider treatment that is considered helpful. And infusion is. And, Dr. B will suggest it. I'd email him and ask him if he has any experience dealing with Kaiser - he always answers emails. Or if he knows any docs in the Kaiser system.

Per Dr G thinking you took that much - all the nurse has to do is say that SHE saw that it wasn't filled at the full amount. I really wouldn't worry about that part - that was their mistake.

There is a So Cal Support group (or there was). I've never gone, but I seem to recall they were Ventura way. Check with the Foundation - or look at their website. You might call the leader and ask what docs are routinely used by the people in the group. Might have success that way.
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.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: Dealing with doctor

Post by Bedbboc »

Thanks VA,
I have an appointment with a support group tomorrow. Maybe it’s the one you are referring to.
Bedbboc

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Dealing with doctor

Post by debbluebird »

Hi ! I took mirapex for almost 15 years. It worked the first few years. They increased my dose. I finally started augmenting, but my Doctor was not informed that, that could happen. He increased my dose more. Then he wanted me to have a sleep study, which I got. He also thought that I didn't have RLS since the mirapex stopped working. I ended up with sleep apnea and took care of that. I stopped mirapex and was put on other meds, they really didn't help much. I had a few bad years. I changed Doctors. She put me on methadone. It worked and I slowly stopped all of the other meds. (5)
One thing about sinemet, I believe it augments faster than mirapex and has a shorter period of effective time. What I mean is, 4 hours instead of 8. At least that was my experience.
Your iron level is too low. Should be up around 100. I believe that an infusion would work better than a pill. Again, my experience.
Regarding methadone, I have taken it for 10 years. The main trouble is finding a Doctor who will give it to you. My Doctor will, but I can't leave my town. I don't think I would find another Doctor who would give it to me. It is addictive, but very very slow over time. I take 15 mg over 24 hours, every 8 hours. It is the same dose that I have taken since the beginning. Oxy is much more addictive, happens faster over time. The methadone started to lose it effectiveness (if that is a word). Ha! I added gabapentine instead of increasing the methadone.
Another option is to alternate the mirapex with methadone, like every few days. That might make the Doctor happier.
Good luck. I've had this since 1985. I'm 69. It seems like forever.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: Dealing with doctor

Post by Bedbboc »

Deb bluebird
I’m happy to know that you haven’t had to increase the methadone for years. I had a terrible reaction to garbapentin and it also did not help. I’m hoping I can manage on methadone alone for awhile.

I saw a 2nd doc at Kaiser and he is willing to prescribe methadone in very low dosage. I guess time will tell. I know that it’s not easy to find a doctor to prescribe it. He did know it is approved for use for RLS. Perhaps more doctors will get the message over time. Thanks for responding.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Dealing with doctor

Post by debbluebird »

I do need to tell you that I had nausea for a couple of months when I first started taking it. I took something for that, then it went away.

Bedbboc
Posts: 19
Joined: Sat Jun 20, 2020 5:53 am

Re: Dealing with doctor

Post by Bedbboc »

Debbie
Thanks. I have had no nausea just sleepy. I tend toward low tolerance with all drugs. I’m doing better, I wrote under prescription meds section. Everyday it changes so ? Rollercoaster ride.

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