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Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/6/2010 10:38 PM (GMT -6)   
I'm new here.  I've been diagnosed with SLE for 10 years now.  Had it all my life, in fact.  Other than being sick, I find the most annoying thing is the Dr.'s attitudes:  "It's all in your head"  "It's not that bad" "It's PTSD from your bad childhood" and "You don't have lupus".  ***?  Where did they learn how to be supportive of patients?  Why don't they just learn to say such things as:  "I don't know what's wrong" "Clearly there's a problem, I just don't know what it is".

SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 12/6/2010 10:50 PM (GMT -6)   
Bless your heart, I agree. I hope your able to find a doctor that's not like that. Keep looking. their not all like that. Is he your rhumatologist or is he your pc?
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/6/2010 11:56 PM (GMT -6)   
I had 4 rhumatologists tell me I didn't have Lupus. Odd, once I started the hydoxychloroquine, my life started getting better between flare ups. Neurologists are the worst to me. They were the ones that said things like "it's all in your head or ptsd from childhood." They were talking about the pseudo seizures that I suffer from. I've come to believe that they are the vestibular migraines and the sensory integration disorder...both from the lupus. All the research I've done points to that those Dr.'s were just not specialized enough. They could of simply sent me to specialists.

I credit my eye Dr. to my current solutions. She's 90 and still practicing. She was the one that sent me to the neurological opthologist. He's the one that diagnosed me with the sensory integration disorder and the vestibular/complex migrains. Now he's sending me to an even more specialized specialist for migrains...whom by the way the waiting list is 8 months to get in to see him and the first appointment is 4 hours long. I'm looking forward to seeing him in Feb., 2011! I'm hoping he'll be able to help me with the myoclonic jerks and the stopping breathing (all muscle/neurological disorders) problems.

All I can say is that my Husband is a saint and has stuck by me through all of this. He's never doubted that everything that has gone wrong isn't lupus derived.
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

pugpuppy
Regular Member


Date Joined Nov 2010
Total Posts : 68
   Posted 12/7/2010 3:59 AM (GMT -6)   
Welcome and bless your heart and you hubbies as well, it sounds as if you have been given quite the run around and you shouldn't have had to go threw all this SHAME ON THEM!!! I think at times the Dr.s get caught up in a nerrow minded way that they don't listen to what we tell them and there for they have it in there head that if they don't know well then it doesn't exsist. I think if they don't know then they should get other Dr.s to look at there findings and work together to find out what the problem is. Every lupus patient is different and has there own simptons and some Dr.s just choose not to see this. I also have to say that there are wonderful ones out there that do listen and do care you just have to serch for the rite one....I tell myself that when are I work for someone they exspect me to do your job 150%, so look at a Dr. as he is working for you and make sure they are doing there job, if they are not doing it then make sure they know how you feel....like a worning as if you would get one at work for slacking, if that doesn't work then they need to be fired and find one that will do there job and will listen... that is so important.

I wish you the best
Hug sent your way
"Start every day off with a smile and get it over with." W.C. Fields

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/7/2010 4:20 PM (GMT -6)   
My sentiments exactly Pugpuppy. I've fired soooooooo many Dr's. I was just venting really. I've seen many posts saying that people have struggled for years to get a Dx. I know I'm not alone. Just wish that the Dr.'s would be so mean. They should simply say I don't know how to help you.

All the best to you, too
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/7/2010 6:34 PM (GMT -6)   
hi welcome to the group. I have a few friends that are nurses and her response to that question would be very simple. EGO!!!!!!!!!! I've met doctors that are such jerks that I never got to figure out if they were any good. They open their mouth and stupid comes out! Then I hit the door and look for a new one. I hope you get the help you need. somone out there has to know something.
blessings
carol
,lisinopril,lortab,azithromyazin,nexium,temazepam,predisone,plaq.
citracal,pottasium,xopenex,advair,spirivia,Vitamin D, matolozone.
Dx lupus, scleroderma, pos. fibro, high bp COPD, need left lung transplant. cervical cancer survivor, osteoporsis,
blessings carol
The Lord is my Rock and my Salvation!

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/7/2010 7:27 PM (GMT -6)   
Thanks Okie! I appreciate your support. In fact, thanks to each of you. It feels good to read that others get stupid Dr.'s as well....well not that we get them, just that I'm not the only one.

My rhmatoid dr. just says see you in a year. I feel lucky to have just that. Now in retrospect he did tell me to see him if anything changes. It's just that he's an hour drive away. He was the only one that believed that it was lupus and willing to put me on med's. I can't drive more than 5 miles due to the vertigo. Maybe I'll luck out and find someone closer.
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/8/2010 10:53 PM (GMT -6)   
My doctor wanted me to see a hematologist, so today was my appointment. I had to drive two and a half hours to see this guy... Talk about a jerk. He brought a student into the exam room and the whole appointment was just a joke for the doctor. First he said look at all these blood test to the med student and then he said some people just like to go to the doctor. Then he asked me if i had issues about liking to see doctors. And then he asked me who my doctor was, I told him, and he proceeded to say what a great doctor she is and how nice she is then he asked the med student if he knew my doctor, the med student answered no and the hematologist started laughing and said he didn't know her either. I'm finding a new hematologist. I just do what my doctors tell me to, I don't order all of the test and didn't want to see another hematologist in the first place, I only went because my doctor( well I call her a doctor she's a nurse practitioner) wanted me to. (wish I'd said that to the hematologist but I didn't).

Just had to vent.

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/8/2010 11:11 PM (GMT -6)   
OMG, J.P.!!!!!!!!!!!!!! That is horrifying! I'm soooooooo angry that they treated you like that! I feel for you. I'm so glad you vented. We're here for you.
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/8/2010 11:58 PM (GMT -6)   
Thankyou, Sweet Butterfly, I got a little teary eyed after reading your post because that is exactly how I felt.

pugpuppy
Regular Member


Date Joined Nov 2010
Total Posts : 68
   Posted 12/9/2010 1:57 AM (GMT -6)   
I am so sorry J.P., I would of freaked out on him! I think it hits a nerve with me because of what I went threw with my old Dr. and so I walk into a Dr. on guard all the time. I would tell your Dr. what a jerk he was and what he did and maybe she won't send anyone to him again.
I was real saprised when I got this new Dr. and I told him all that has taken place befor him (my reg. Dr.) his jaw dropped and he asked if i wrote a letter to both the Dr.s , I was saprised that he would say that, he replaced the Dr. that I fired, she had a baby and found out she has breaste cancer...I am sorry for her but still mad at her for heck she put me threw and the ruemy she sent me to well lets just say I feel nothing for that heartless .ss!! she isn't much better I have to say.
Anyway I am so lucky that I was able to find a wonderful Ruemy that I can e mail and he gets back to you by the end of the day and hes just awsome!!! he is 3 hrs away but still cares to check on me as well. My reg. Dr. seems to be earning my trust as of rite now he seems to be good.

I am sorry J.P. I got off on my venting again. I hope that you can find a ruemy that would be your best bet.
waves of hugs
Oh yah i am dropped down to 5mg Pred. this thrills me, hope I will do ok on that low dose
"Start every day off with a smile and get it over with." W.C. Fields

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/9/2010 2:50 AM (GMT -6)   
Thankyou pugpuppy, I will take your advice and tell my doctor about him and maybe even write him a letter... he's the one who did my third bone marrow biopsy even though I told him I'd had two already that came back normal and I didn't want to go through that again but he insisted and so I trusted his judgment as a doctor. And now he's trying to say I enjoy that crap or something??? It's funny how he ordered a few of those "blood test" that he is now mocking. I guess he thinks I'm wasting his time now. He told me I'm as healthy as a horse. It's a cancer hospital so compared to other patients I am doing ok. But he didn't have to be a jerk about it. And he even scheduled me a follow up, why? I don't know. But I 'm not gonna waste my time with him again.

I'm really glad to hear you have been able to taper your pred down to 5mg. I hope you will begin to feel more like yourself real soon.

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/10/2010 1:31 AM (GMT -6)   
Pugpuppy~Congrats on being on a lower dose of 'roids! And I'm happy for you that you have such a cool rhumey that does email with you!

J.P.~I've thought of doing many letters and never get around to it. Maybe I will some day, especially since these people still hold a bad spot in my heart. I had a** hole Dr.'s make follow up appt's too. Always didn't go back. Listen to your gut, don't go if people treat you bad.
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/11/2010 1:12 AM (GMT -6)   
Yes, I definitely agree. But I wonder why a specialists would schedule a follow up if they don't think anything is wrong with me. Maybe he's just covering his own a**.

You're so right about Dr.s just needing to say I don't know whats wrong with you or even if in their opinion you're not sick just say it without making you feel like a hypochondriac or being degrading about it. That's one thing I really appreciate about the nurse practitioner I see, she doesn't know whats wrong with me and she tells me that, but she's able to see that something is wrong. And she wants me to feel the best I can and she's willing to help. But she can only do so much, she's not a specialists.

pugpuppy
Regular Member


Date Joined Nov 2010
Total Posts : 68
   Posted 12/11/2010 3:31 AM (GMT -6)   
Hi J.P. I think you are rite about the Dr. wanting to schedule a follow up. I wonder if he was thinking he looked real smart in front of that student Dr. or what ever he was.
Sad that he didn't focus on you and the problem,I bet that would have impressed the student more, he was probably thinking what a dumb ***.

I think that nurse practitioners are better at some stuff then Dr.s, they take more time to take more time with you atleaste the ones I have seen in the past have.
Can she get you the meds you need?

I have had chest pains and finally had to lay flat and strech all those muscless in my chest it was like rubber bands streching OMG!!!!!! it hurt, helped a bit.
I will be glad when its all gone. I am swelling again and hurting, think the exstra steriods they gave me befor the surgery wore off. Well such is life rite.
I used to say well atleaste I have my health......now I say atleaste I have LIFE...


waves oh hugs sent your way
There can't be a crisses next week. My schedule is already full.
Henry Kissinger

Sweet Butterfly
New Member


Date Joined Dec 2010
Total Posts : 11
   Posted 12/12/2010 1:07 AM (GMT -6)   
J.P.~ I think they sign us up because they assume that we are hypocondriacs and will give them more money. Also, I went to a specialist who recieved grant money from the Lupus Foundation and even she was an a** to me. She said that I didn't have lupus as well. We think she just doesn't want to deal with anyone that isn't dying since she told me all of her clients are doing that. So, why couldn't she just say, you're not sick enough for my patient studies? I think most of them have God complexes.

Puggpuppy~at least I have LIFE is so true!
SLE, Sensory Integration Disorder, Tinnitus, Organ removal: gallbladder & 1/2 thyroid. Ulcerative colitis, GERD, drag rt. leg. Migraines: Complex, Vestibular & Ocular. Muscles: pains, weakness & severe spasms.

400mg Hydroxychloroquine, Flexeril, Omeprazole 200mg, eye drops, asprin

partsolve
New Member


Date Joined Dec 2010
Total Posts : 8
   Posted 12/12/2010 1:27 PM (GMT -6)   
I honestly think that the med community is switching over to the understanding that MOST symptoms are PHYSICALLY caused. Not the problem of mental problems or anxiety.

If you dont like your doctor, get another one.

pugpuppy
Regular Member


Date Joined Nov 2010
Total Posts : 68
   Posted 12/12/2010 3:46 PM (GMT -6)   
I think that is what we all agreed on....we were talking back and forth about how we don't understand why the Dr.s have to be rood and treat ya like crud.
That is what I got from reading the posts and so I guess if you have not been threw what some of us have you wouldn't understand how we feel, sorry if you don't understand, but glad for you if you have been so lucky to not have had to.
waves of hugs
There can't be a crisses next week. My schedule is already full.
Henry Kissinger

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/12/2010 7:32 PM (GMT -6)   
pugpuppy,
Ouch! sorry you're hurting like that, do you usually hurt on your chest or are you like me, your body just decides where it wants to hurt that day or week or month. I have some places where I get reoccurring pain but it comes and goes. I was thinking the same thing about the dr. looking like a dumb a**. I don't think the med student was laughing but I was in shock at the dr.s behavior so I didn't really notice the student(or whatever he was) but I'm thinking I probably would have if they had both been laughing at me. I'm pretty sure the dr. was only cracking himself up. I know that dr. wiped the smile right off my face.
The nurse practitioner I see can prescribe anything, I think. But she's not sure whats wrong me and she said she's tested me for everything, at least she is willing to refer me to a rheumy if we can find one who sees fibro patients. Right now I'm only taking bupropion, xanax, and tramadol.

sweet butterfly, you're probably right. and thats wrong anyway you look at it. Yeah, and that doctor should've just told you instead of being an a**hole.
It's so hard to find a hematologists who will take my insurance although it doesn't matter cause I'm not going to see anymore hematologists, I've already seen enough of them. Like I said I only went again because my NP asked me to.

hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 12/13/2010 9:30 PM (GMT -6)   
I am so sorry that all of you are going through this!

I have had many doc's primary care's ect that would look at me like I was crazy....I told them to run the blood work and their faces said it all...OMG you need to see a rheumy!

I went to a rheumy and he was ok. I went for a second opinion and this rheumy was old school but I feel I got a very extensive exam. this one came back with SLE and possibly an RA overlap. (the first one was sle and sjogren's).

It shows that we are our own advocate! fight to see a different doc if you need or want to! they are WORKING for us!!! good luck everyone!
DX 11/2010 Lupus and Sjogren's
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