DR. appt. update

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
keana
Posts: 10
Joined: Mon Feb 09, 2009 9:38 pm
Location: Chicago

DR. appt. update

Post by keana »

Well here goes, the Dr. whom I paid $200 to see and whose name I got off this board is a goof and her name should be removed in my opinion.
Some of you may know my story so I won't make you relive it.

When I told her about the Norco that helped me after my surgery in 2007 she said that opiates are very dangerous and should not be used. She assumed I was still on them I had to remind her 3 times it was for a week or so while I was recovering.
I gave her the Mayo. Clinic Report and she did make a copy of the portion that spoke of refractory RLS (I was happy she didn't rip it up like my other DR.)
She wants me to stop taking the clonazepam because I don't need it being I am on Requip. The 4mg. of requip is way to high so I need to start tapering down. Her method of tapering down is (i have 3 left) so do what I can with them then no more because I've been on them to long. She wants me to have a cbc, check my liver and kidney function because of the high dose of meds."Popping that many pills is not good for you" And the Norco could destroy your liver : hello have not had it in over a year. Also she wants me to have a EKG and any x-rays I have had previously and a MRI because she said I had authritis in my shoulder because it kind of cracked when I lifted my arm. I tried to remind her I was here for the RLS/Sleep problems.
So she took out her script pad (woo-hoo) she's actually going to give me something to help me sleep no she gave me a RX for 6oomg. of Motrin and 100mg. of Ranitidine. When I asked why she said the Rant. would help my stomach because of all the meds. I was on, and the motrin is good for my heart. As she was leaving the room I continued to talk..hey $200 and 3 hrs. sleep I wanted to be heard and understood, as I was talking she said I was hyper and that could be my sleep issue. Friends I am far from hyper. To damn tired to be.
So much for me getting any relief. I am done.
Last edited by keana on Wed Feb 18, 2009 9:18 am, edited 2 times in total.
Keana

Polar Bear
Moderator
Posts: 8790
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Post by Polar Bear »

Some doc.... I don't think.

As for a prescription for the ranitidine, here in UK we can buy that OTC from our local chain supermarket at .75 dosage x 12 pills for around £1.50, thats probably $2.

Lady doc needs educated. Can they just put down that they are an 'expert' in rls, regardless of their experience and training in the subject. Note- I did not put interest in the subject cos she doesn't appear to have much interest.

Keana, you must have felt so frustrated....

A personally recommended doc is what you need.
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

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

Hi Keana. How frustrating! As for what it takes for a doctor to be on the list, they don't have to prove anything, obviously. It would be helpful if you contact the staff at the RLS foundation and ask them to remove this doctor from the list, though, and explain why.

In the meantime, I've emailed you some information on clinics that will prescribe meds to you until you can find a competent doctor. I'm hoping someone from Illinois will chime in with the name of a doctor who could be helpful. Otherwise, there's always flying out to John's Hopkins to see one of their RLS experts, or to LA to see Dr. Buchfuhrer.
Susan

User avatar
woodsie357
Posts: 147
Joined: Wed Feb 04, 2009 7:54 am

Post by woodsie357 »

well as I was reading your post I wanted to post my own 4 letter word reply to this doctor you saw. Several 4 letter words in fact. But I'll be nice and won't start a swear fest.

that's horrible. it sounds like she gave you rantidine with out any reason to. And isn't motrin going to bother your liver too? and have possible bleeding problems if used for a long period of time?

I was also asked by the doctor if I smoked or had ever smoked and as you said you know that's bad for RLS. she just really didn't seem to take you serious. I'm so sorry.

Maybe call in a few days and ask if she's read the mayo info and if she has is she willing to revisit your problem... say you tried the motrin and if it worked or not, my guess is that it won't but I'm no doctor.

also wont you have increased RLS with lowering the requip?

Ill say a prayer for you.
Someone cares about your sleepless nights

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

k, Not to preach but your points 1 & 2 are worth strong consideration. Ok, so I lied and preached. Other than that, what a sorry and sad appointment you had. But, don't give up. Many here have gone thru similar situations. I am not from Illinois and cannot offer much except hope. Persevere. You will find the right doc who will listen and work with you. Best wishes and luck. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Ah, Keana, that just isn't right.

And, on so many levels.

It may not be high on your list, but please consider writing a letter to the Foundation about this. Tell them what she did. Her name should NOT be there.

I wish I had some way to make this better. I don't. I only know that this is horrible that we continue to have to go through this, and I don't see it changing any time soon. So many people need to be educated and there isn't enough money to do that.

One option I just thought of is to complain to your HMO. A formal complaint. You've gone to the doctors that are there and they REFUSED to treat you. The HMO has an obligation to find a doctor who will. It would be a battle and you might not want that; I totally get that. It is an option if you are angry enough and have the energy to pursue it.
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.

mackjergens
Posts: 406
Joined: Sat Jul 21, 2007 5:10 am

Post by mackjergens »

I smoked for 35 yrs and the last few yrs I smoked 3 pkgs a day.. I now have been off cigs, for 9 yrs this Sept. and I have noticed NO difference in my rls, so I think it would be to your advantage to stop smoking, trust me, you dont want the health issued I have due to smoking all those yrs, but I honestly do not think its going to help your rls, just my opinion..

Again, please try to stop smoking. That is all I am going to say.*L* we reformed smokers can really get on a soap box most times.. but I will tell you this and It just might help. I never knew how bad I smelled until I quit smoking!! After being in hospital for 9 days, and no cigs, I walked into my house and could not believe how awful it smelled!!! So every time you light up, remember anyone who comes close to you during the day will smell how bad your stink..*L* funny, but not funny!! And it does stink to people who do not smoke.. is an awful smell to me now..

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Crud!!!! Are you going to do anything she says? Just worried about stopping clonazapam abruptly....can be bad for some of us and we have to stop very slowly.
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.

keana
Posts: 10
Joined: Mon Feb 09, 2009 9:38 pm
Location: Chicago

clonazapam

Post by keana »

I have no choice in stopping she would not give me a script. So I've been crying and of course pacing. The requip is gone in 3 days so that will be it for me I cannot take this w/o meds. I've been on meds. for so long now I have to go cold turkey....I cannot do it.
Keana

ViewsAskew
Moderator
Posts: 16566
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Keana, that is AWFUL. That is malpractice, in my opinion. OK, maybe not, but unless I'm missing something here, that seems negligent in my opinion.

You really ought not stop a benzo cold turkey; no doctor recommends that. Period. I would call her first thing in the morning and tell her nurse that you have looked at Klonpin's website and it recommends a tapering process. (Go look to be sure, but I am positive it must.) There are many risks associated with cold turkey withdrawal of benzos that have been taken for more than a few weeks.

She should absolutely know that.

I went to Roche's site (the make of Klonopin) and found this PDF. Please read what it says about abrupt withdrawal. And then call the nurse and tell her. The doctor MUST give you enough to plan for the taper of the drug. Not doing so would be putting you at risk. She might not agree with what you were taking, but she is required to do no harm. This is doing you harm.

Next, you have to see someone right away. I know the one doctor in your HMO was not appropriate at all. What other options do you have for a primary care doctor on your insurance plan? You probably cannot switch at short notice.

If you cannot find someone to see and she will not assist you, I'd go to the emergency room. Take a list of meds you can't take or they might screw up. Even if you are not one of the sensitive people who has difficulty stopping a benzo, abruptly stopping is a different issue. It is possible you will experience nausea, chills, etc. At that point, the emergency room is your only option. Again, if you can, take someone with you who can advocate for you.
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.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

I agree with Ann. This doctor is guilty of malpractice on a couple fronts. First of all, clonazepam should not be stopped abruptly, especially at such a high dose. It should be tapered, or you can have severe withdrawal. Second, stopping the Requip abruptly like that without something to cover the increased RLS is akin to torture.

You're likely going to need to go to an urgent care or an emergency room. Be sure and tell your family what's going on so that someone can be there and advocate for you. And once you get some treatment again, you need to sit down and write a letter to the state medical licensing board. There is just no excuse for your doctors' unwillingness to treat you, and even less excuse for them taking you off your meds and not giving you alternatives!
Susan

User avatar
woodsie357
Posts: 147
Joined: Wed Feb 04, 2009 7:54 am

Post by woodsie357 »

agreed ladies, and gentlemen,...

This is going to get worse before it gets better. Dig your heals in and fight. Once you run out of requip you're going to be in a world of hurt, an ER type setting might be the best, if you can get a baby sitter. you're legs are going to be freaking out once you run out of Requip. So might as well be in a place at a time where they are going to be seen driving you nuts.

I don't think your doctor got a clear view of the meds you've been on or when you were on them. Did you take a list with you?. Here is an example of one.
History of Medications used for my RLS
Updated 02-16-2009
 
Medication Dosage Effectiveness Side-Effects
 
Benedryl         50mg to 100mg          Very poor       Intensified the torture
                      Discontinued       greatly
 
Tylenol PM     adult dosage               Very poor       Intensified the torture
                    Discontinued                                     greatly
 
Amnitriptaline   50mg (I think)         Poor to fair      Mild help. Weight gain!
                        Discontinued                                Moodiness
 
Trazadone       150mg                  Poor                    No effect at all.
                      Discontinued
 
Requip             2 months        Very poor      I felt it made it worse.
                       Discontinued                                                              
 
Hydrocodone  Discontinued Poor              I was able to lay                          awake in bed longer

Neurontin        900mg            Poor to fair       Increased sleep from max
Discontinued sleep from 2hrs to 4hrs
                                                                   Severe weight gain.
 
Alprazalam      1mg                 Poor                No effect on sleep
                    Discontinued                              Dizziness                         
 
Klonipin         Discontinue      Very poor          Mind went 100 miles
an hour totally restless

Ultram         50mg           Poor to fair      Kept me from committing                    Discontinued                           suicide Counter productive
in terms of RLS.

Clonidine hcl   0.1mg            Poor to fair       Vivid Nightmares,
                    Discontinued

Oxycodone-APAP 5-325        Poor                No increase in amount of                     Discontinued                          sleep. “Bug eyed” awake.

Ferrous Sulfate 325mg          none noticed so far       None
 
Rozerem 8mg Discontinued      Very Poor            No difference.

Mirapex Discontinued Poor to Fair I felt worse after running out
but I didn't feel it helped
while taking it, that I
remember

Methadone 2.5mg started 2/11/09 Unknown at this time None noticed.
Just started.

This is one of my lists, and it's not pretty in this chat but its been a great help for me to take it into my doctors, they know every thing I've tried etc.
Last edited by woodsie357 on Wed Feb 18, 2009 9:33 pm, edited 1 time in total.
Someone cares about your sleepless nights

User avatar
woodsie357
Posts: 147
Joined: Wed Feb 04, 2009 7:54 am

Post by woodsie357 »

wow that totally messed up but you get the point.
Someone cares about your sleepless nights

Neco
Posts: 2297
Joined: Tue Oct 04, 2005 10:18 am
Location: Somewhere in the midwest
Contact:

Post by Neco »

Bloody ############..

I am getting SO sick of these doctors. You have got to find someone.. And you know it won't get you an immediate cure, but see about going to your local news, especially if these two doctors are close together.. Tell them exactly what both doctors did to you, especially ripping up the Mayo Algorithm, and then the other one making you go cold turkey from both Requip and a Benzo.

If they don't eat that story up, they would be insane. I cannot believe this crap.. We need to start a web site that people can report these experiences on, so people know the name of the doctor and what they did, so they don't ever make the mistake of going there.

Aiken
Posts: 880
Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

I support the malpractice theory. Not one thing the doctor did was appropriate, and some of it was directly harmful to you, the patient.

I'm especially concerned that you were arbitrarily given ranitidine, which will suppress your stomach acid, which in turn leads some people to absorb less iron and reduce their ferritin score, which in turn leads some people to worsened RLS.

I would report this person not only to the RLS foundation, but to whichever boards certified them. They should not, under any circumstances, be treating an RLS patient. Quite likely, they shouldn't be treating anyone at all if they think they can treat things they know nothing about.
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.

Post Reply