[confused1]

I saw the new rheumy about six weeks ago and it wasn't wonderful. He was very nice and very kind and said I really was just suffering fibro and exercise and anti-depressants would help and that it would be best if I go off all my meds. I said thanks but no thanks, gave a quart of blood and left.

So things have gone worse lately. My hair started to fall out horribly. I've lost half of it over the past month. I'm running low grade fevers again all the time, pain in my face is over the top and now I'm having constant head aches and the facial pain radiates down into my neck and shoulders now. No surprise, I'm exhausted all the time. Fatigue is just crushing me. I've had pain in my face and head for six years now, almost constantly. Maybe I've just become so tired that I can't take it anymore. Or maybe I really do hurt more. Either way, I'm having a very hard time handling the pain at times. I end up moaning and pacing and wishing very much to die. No, I'm not depressed really. If the pain was bearable, I would not consider death a good option. I like being alive. But not like this.

As for the exercise option, about a month ago I got a treadmill and I'm walking at a good pace about 25 minutes a day. Except for the days when I can't even stand it. But probably three or four times a week I walk. It's not doing anything but putting blisters on my little toes. :lol:

Today I finally went to see my gp and told him that I have to have something for breakthrough pain. All I take for pain is Neurontin (600 mg three times a day) and ms contin (30 mg three times a day). He said the rheumy had issued a consult that said it's inappropriate to give me narcotics. That puts my gp in a bad spot. Apparently FDA scrutiny is pretty fierce. Despite all that, he believed me and gave me an RX of oxycontin for break through pain -- no more than one a day.

If a problem comes us, he said, he might have to send me to Swedish hospital in Seattle. And it's possible that he could lose the ability to prescribe for me.

So I want to fire this rheumy so he has no say over my treatment. I can't just stop going to see him, I want off his patient list. How do I go about that? Anybody ever actively take themselves off a doctor's practice?

I'm open to suggestions.

Sunny

 

[Pink Pearl]

Hi Sunny,
Where do you live? Are you on the east or west side of the cascades?

My rheumatologist practices at Swedish Hospital. I'm not sure if he is taking new patients now. I'm seeing a new neurologist in the same medical group who I liked on first visit. I see her again tomorrow. So far, I am impressed by her knowledge of sle and its effects on the brain.

Do you have an insurance that has "gate keeper" policy or are you working with an HMO, PPO? If you have a gate keeper, then you identify that you want your GP to be the one who does all the referring to all doctors for you. In essence, you have to see him first, then he chooses who you will go on to.
PPO: you can choose who you go to as long as that doctor is on the list of participating physicians. If you want to go to a doctor off that list, then you will encounter financial penalties. This can be a higher copay or a higher deductible.
HMO: you have to stay within the doctors affiliated with that group. If you go out, without a referral, then you are liable for all costs.

To remove yourself from doctor's care, write to him/her and explain that you no longer want that person as your provider. You can send a cc to your GP so that it is on their files as well. Then, you will have your GP as your primary care physician, assuming that he/she is willing, and go to that doctor until you have a new rheumatologist. You may also want to let your insurance know that you are not staying with that doctor and that effect that date, you are no longer under that doctor's care.

Something I did a long time back, was to talk to my pulmologist, who is basically my pcp, asking that he would be the only doctor on file who writes narcotic prescriptions. The benefit is that if there is a drug review, then all the info is in one place. It also helps the other doctors who know that if they have a concern about narcotic meds, they talk to that doctor. This method has worked well for me for 15+- years. I found I was hating the feeling I had when I needed prescription pain meds, and the other doctors were a bit hesitant to write them without knowing when the last refill was, who else was writing them, etc. This has made things so much easier for ALL of us. The other doctors like knowing who to talk to, and that they are "off the hook" on being asked to write prescriptions for narcotics. For me, due to allergies, the only medication that works is demerol. Understandably, with all the cautions, the doctors are reluctant to write repeated prescriptions. By being able to go to one doctor, it is much easier for us all.

I live about 30 miles east of Seattle, so if I can help you with finding a doctor locally, please let me know.
Hopefully this gives you some answers to your questions.
Sally

 

[confused1]

Sally, thanks for the great answer. I live east of the Cascades about 3 hours. My gp is the only dr. I've had who was worth anything so far. One rheumy in town at a time. The old one was outright rude. The new one is nice, but obviously thinks it's all in my head.

Sunny

 

[x_claire_x]

Hiya, perhaps its time to ask for a second opinion.. but search for a Rheumy that is recommended, perhaps by the previous post, and has a working knowledge of auto immune disease... then get your symptoms diary, photographic evidence and visit a new Rheumy, you can't have faith in somebody who thinks its all in your head!! You need the best for you and you need a health team that is working for you not against you, you have enough to fight as it is> Please believe you are worth more than that... go sort it out, find a way to go elsewhere and I wish you all the best XX
Claire X

 

[Pink Pearl]

Hi Sunny,
Are you closer to Seattle or Spokane? I don't know of doctors in Spokane, but several of the PNW LFA chapter members live in that area and have helped with the symposiums the chapter has held there. I would suggest you call the PNW LFA office if you are closest there and see if they can give you names of rheumy's in that area. Then, call and interview the doctors over the phone first before you travel to see them. If they won't give you time for a phone interview, then forget them!

If you are closer to Seattle, I can definitely refer my rheumy or one a friend goes to. I would not hesitate to refer to the (new) neurologist I have seen twice, and REALLY like! She is fairly new to the group where my rheumy and she are, but I really like her approach. Heck, the woman pulled out ALL old "volumes" of my chart to track down the eeg's that I had done 10 years back! Since each chart volume (we are on volume 5 now) is about 3" thick, she had some serious reading to do!

Let me know if I can help with info over here.
Sally

 

[onetay]

Sunny,
I read your post and it seems to me that he is a nice person, but your health is what you are seeing him for and have to consider that formost. With the nice out of the way I would call and thank them for their time but that you feel you can not go along with the treatment that was advised and are now having more symptoms that need to be addressed. You have decided that you will seek treatment with a doctor better able to treat your conditions and symptoms. I would also start what I like to call interviewing future doctors. You should be looking at their background and also if they are willing to listen to you and what is wrong with you. I do hope that this helps you and if being nice does not work just let them know you will not be coming back because of the advice that was given at your last visit, you are not comfortable with stopping treatment. I hope you start feeling better soon.

 

[oesa]

I've not fired a doctor, but I fired a dentist last year after her receptionist wouldn't fit me in for an emergency - I had a nasty inflammatory reaction to a tiny bit of food lodged behind my last molar - you could actually see the swelling just by looking at me, and it was incredibly painful. I actually cried on the phone when she offered me an appointment in a week, which is HIGHLY atypical for me.

Once I could think straight again, I wrote the clinic a letter, telling them about my experience with the receptionist, and saying that I appreciated their care, but felt I needed to make a change to ensure that my health was being taken care of properly. And I asked them to forward my records to my new dentist. I was polite and factual, or as much as I could be given how angry I was about it. They actually wrote me a reply apologizing, and saying they'd go over emergency appointments with the reception staff, and acknowledging that it is the responsibility of everyone on their team to help patients in pain.

It definitely felt good to put the stamp on that envelope! And I do think that we as patients have an important role to play in educating our physicians and caregivers - I'm pretty sure my dentist wouldn't have had any idea this had happened if I hadn't actually wrote to her to let her know why I was leaving - who knows, maybe some other poor patient with an abscess will get better care because I spoke up!

I don't know how firing a doctor would work with (or impact) your health care system/insurance, but I find putting things in writing is always a good idea!

Lisa

 

[ATS]

Sunny,
I read your post and it seems to me that he is a nice person, but your health is what you are seeing him for and have to consider that formost. With the nice out of the way I would call and thank them for their time but that you feel you can not go along with the treatment that was advised and are now having more symptoms that need to be addressed. You have decided that you will seek treatment with a doctor better able to treat your conditions and symptoms. I would also start what I like to call interviewing future doctors. You should be looking at their background and also if they are willing to listen to you and what is wrong with you. I do hope that this helps you and if being nice does not work just let them know you will not be coming back because of the advice that was given at your last visit, you are not comfortable with stopping treatment. I hope you start feeling better soon.

i think this is a great response. i was once dumbfounded by a doctor who, after i had been diagnosed with SLE over and over again for 10 years, decided to tell me i had fibro and was needlessly taking meds! i was stunned and left. but i did basically this at the next appointment. i am so glad i did, i now have a wonderful doctor. but i've noticed, many people have appointments with a lot of frogs before the find the good one!

 

[Pink Pearl]

but i've noticed, many people have appointments with a lot of frogs before the find the good one!

When I taught skiing, the joke of our school was that you had to go thru a lot of flakes to find the right one! About the same analogy.
Sally

 

[helloos]

I just don't know why these doctors do not understand the level of pain we go through. They think it is nothing. I guarantee if they were to experience just one hour of our pain, they would be screaming and jabbing themself with an iv full of pain meds. No one should have to walk around in so much pain. I hope that it works out for you and you can find another treating doctor.