[spellbinder]

greeting all

one thing i hate about myself is that nine times out of ten i'm always right and i was right about my doctor visit. i'm scared and confused again, not to mention that i'm extreamly ***** off. first she kept me waiting for over an hour. when she finally came in she mentioned that they didn't send or do the lupus panel. first i asked about her experience with lupus patients, she sounded like she knew what she was doing, spouted off some universities quite proud of herself. so then i asked her why did she need the lupus panel. she said to justifiy the diagnosis. which already sounded abit off. then she proceeds to tell her methodology of practicing medicine. first off she won't do opiates. she doesn't believe in them, and that i would have to see a pain specialist and she would decide if i need them, at that point i told her what i told dr k. that they would have to put me in the hospital for a rapid detox. she said oh, we can will put you into rehab...wrong!! one thing is i'm not staying in a rehab facility and not in my home. two, i can't (nor will) go in on out patient basis due to the fact i don't drive and my husband can't take time off, i don't rehab, i just need to control the withdrawl. now the biggy...she won't even prescribe my other meds, cymbalta, trazadone, soma or gabatril, that i will have to go to a psychiatrist... at that point i got up and asked for khoa, my neuropath, she said he can't write your prescriptions and he is not an MD. i told her i knew that but i wanted him here with us, she said well i don't know where he is and you don't need him. i told her that he has been with me from the beginnig with dr k. she said fine but thats not going to help us now. at that point i walked out. i found khoa and went off, and i told him to put me in touch with dr. kivanc this is wrong. she is questioning dr kivancs' diagnosis. so he did give me an email address to contact him.
i don't know what i'm going to do. at this point i think i'm just going to take the meds i have and when they're out i'm just gonna quit...i'll have a real ugly time with the withdrawl, i mean REAL UGLY. i can't go thru this again, i won't. after years and years looking for answers and i finally found them and a treatment plan that works some dolt who doesn't feel comfortable with someone elses diagnosis or writing prescription derails everything that i've accomplished.
its not worth it, i lost my career, my house (prior to this one) my husband and my life to this **** illness. i'm not doing it anymore...

 

[Pink Pearl]

I am so very sorry you are having all this trouble with a doctor. Why are you not seeing the doctor you saw initially? I probably missed something along the way on this reason.

I understand your reasons for not doing the outpatient/rehab???/etc. I went thru a pain management program in Seattle. It is run with one of the larger hospital/clinics in the area. All I got out of it was major asthma attacks, pulled muscles, and nothing positive. As a result, I am not a big fan of that philosophy concept. My "pain" problem was that I was having a major lupus flare and with that had a massive case of peritonitis. They wanted me to "work - exercise" thru the pain. All it did was make things a LOT worse. My pulm doc finally put a stop to me going thru it. Then, they got furious that I was not able to keep up with what they set out. To me, it was stupid. Just my experience that they wanted me to deny what I was feeling, what was actually wrong with my health and in the end, made things a LOT worse!

Is this Dr the only rheumatologist in your area?
I don't know what else to say but I am so sorry that you had this happen.
One of my absolute dislikes is breaking in a new doctor. I just hate it! My sympathies to you to have to do this - once again.
Sally

 

[x_claire_x]

Hiya, just wanted to send you my thoughts, what an awful time. Don't give up now though, you deserve better. Can you find another Rheumy? It sounds strange for someone to state what they 'don't' do before really knowing what works and what doesn't... very strange and very smug! She should travel a mile in your shoes.. pity we can't give them a taste of how it feels in our bodies, bet she would follow ANY regime that works then... stupid woman.
Take your time, lick your wounds and then get another Rheumy as soon as possible.... all the best Spellbinder, take care of yourself,
Claire X

 

[spellbinder]

thank you claire and sally for the sympathies, i'm really really bummed.
my rheumy has taken a sabatical to go be with doctors with out boarders for awhile and he is over in turkey, where he is from. so he has asked this woman doc to over see his cases. the operative words here are "over see" not rediagnos and create her own treatment plan. so i wrote him an email and copied my neuropath about what had happened. then i spoke with my gp, who has been my gp for 20yrs and was the first to suspect lupus and referred me to my rheumy (dr.kivanc). my gp was furious after i called him and told him what had happened so my gp and my neuropath had a consult and my gp has agreed to over see my case for my IViG treatments and write my prescriptions. i will still see the pain doctor that is in the same practice with out to much interference of changing much. its not that i want to be on the opiates but they were the only thing that worked. we went thru alot of different things until we came up with the treatment plan i have. and it has started to work so i think things may have settled down a bit. right now i'm not feeling very well. all the stress kicked up my ulcer and i'm shakey and my chest is alittle tight so i think i will take a nap. thanks again

hugs and kisses

 

[ROSJAC]

HI, I am so very sorry for all you are going thru. I am originally from the Pittsburg, Pa. area.I know when I travel home, I go thru Wheeling, W. Va., therefore, I do not know how far you are from Pittsburg. Are you familiar with the Magee-Womens Hosp.in Pitts.? They have a lupus center there.
(www.lupuscenter.org) Perhaps they could offer you the help and care you need. I was dx. with SLE 11 years ago and now have lung involvement. Also, have Raynauds and depression. Lupus sucks, but we have to try to live the best we can, if not for us, for those that love us. I'm great as long as I'm sitting in a chair or lying in bed!!! Please take care. Rosie

 

[pollianna]

I duuno Spellbinder, don't these doctors know that were ill :worried:

I'm glad you have a GP who understands you and doesn't think your a druggie seeking out meds. I'm flabbergasted byt the attitude of the woman

P xx

 

[onetay]

Spell Binder,
It will be okay. I have had to do this myself. If she wants to do the lupus tests let her but in the mean time tell her that the plan you are on is working and as long as she is looking you will stay on that plan. If she still will not fill the scripts let her know that you will be looking into find another doctor since she don't feel comfortable doing what is best for the patient and you will also be contacting the medical board to let them know that she is not doing her job and at least it will be on record against her. Let Dr.k know that you are looking for a new doctor and could he continue until you find a doctor that will work with you as this one did not see that you were doing well with this plan.
You are right that you have not come this far to fight with a doctor about treatment and since what is doing good to change would be bad for care. Do not go without your meds I have had to do that a couple times and it is not good for the body or the lupus. Remember we are here for you and will help in any way we can.

 

[keebler]

(((Spellbinder)))

Sorry you had to go threw all that.

I was relived when I read your second post. It is great that your GP has taken over for you.

The added stress that your experience is awful.

Take care and rest all you can.
Love,
Lyn

 

[LolaLola]

Dear SpellBinder,
I am glad you have a way forward now. Sometimes the fright can overwhelm us. I am very fortunate that I don't often have that happen, but then I have access to a good Consultant and a good GP.It is not even how often you need them which matters, often it is just knowing they are there.

I hope you can have a relaxing day. Your losses of your home etc. are really big things to have happened. I am so sorry!
X Lola

 

[debatat]

Spellbinder, I am so sorry that you had such terrible treatment from this so called doc. I am really pleased that you have such a supportive gp though. I hope you manage to get things sorted. Have a lovely weekend.

Take care

Deb