Dr.'s Bed Side Manner

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".

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.

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

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.

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.

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

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.

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

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,
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.