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View Full Version : Doctor's Appointment Yesterday! Warning:Lots of Venting!



adl011
05-18-2011, 12:28 PM
Hey guys,

I had my appointment yesterday that I had been waiting on for almost 8 weeks. It was AWFUL! The doctor had told me when I first set up the appointment that he would treat me for my lupus, but apparently he had slept since then because when I mentioned that was the WHOLE reason I was there, he said "I don't treat Lupus...I'm a NEUR-O-LO-GIST (while underlining it on is coat with his finger). Rheumatologists treat lupus." I told him I knew that and that I had asked him and his response was "Why would I say that? I know nothing about lupus!" AHHH. By this point I was fighting back tears of anger any way, and then he said, well since you're here let's talk about your seizures. After I told him how they started and how they had been "treated" over the past several years, he proceeds to tell me that he doesn't think I have seizures. He thinks that I have headaches and I'm exaggerating and/or faking them for attention. He even mentioned hypochondriac while we were speaking! Needless to say, I DO NOT want to go back to see him. He ordered an MRI and an EEG for next week, but scheduled my follow-up appointment for June 21st, even though he isn't busy. He just thinks there's nothing wrong with me. I don't wanna go get the tests and have to pay for them and then go back to him, but my husband really wants me too! I'm going back to my GP tomorrow to ask him if he will treat me temporarily until I can get into a rheumatologist (at least 6 weeks) and I cannot live for 6 weeks in this constant pain again. It's gotten so bad now that I have to use a cane to walk most days. I'm 25 years old, and my 77 year old grandmother gets around better than I do, and she has 50 years on me. It's so frustrating. I cried for hours after the appointment yesterday because I was so angry. I had gotten my hopes up so high about finally getting some relief, and they were dashed in about 2 minutes with this doctor. It was all I could do not to just walk out of his office after he said all of that to me. I just really hope my GP will give me something for pain and I would like to try MTX, but I'm not sure if he'll prescribe it. Plaquenil and Prednisone don't work for me, so I need something. I have WAY too many symptoms interfering with my daily life. My son (9 months old) needs an active 25 year old mommy, not one that acts like she's 90. I need to get healthy so I can take care of my husband and my son, and not the other way around! Plus I'm trying to graduate next fall, and it's going to be very difficult to do that if I can't get my health in order. I'm supposed to start my Practicum and Internships in Counseling in the Spring, so that doesn't give me much time to get all of this under control.

Thanks for listening guys. I just really need some relief. I'm about at my wits end with this pain. I can't think straight and I can barely move. I just want to be ME again, not the me that Lupus makes me be.

God Bless,
Amanda

SandyR
05-18-2011, 01:24 PM
I'm sorry to hear about this. I know you were really looking forward to working with someone competant and gaining answers. If it were me, I wouldn't be going back. Why would you want to spend money (lots of money) to go to someone who has already decided they don't believe you and doesn't want to treat you. If your tests show something he'll likely blow off the results since he's already blown off the rest of your symptoms. Save your money. Call the GP and tell them what happened and ask if they will run those tests or if they can give you the name of a competent doctor, someone they would recommend to their mother or spouse. Don't forget, you don't have to go back to this guy. I'd probably even call the insurance company and file a complaint or maybe the state medical board. This guy was extremely rude and obnoxious and condescending to you and you don't deserve to be treated that way and you certainly didn't pay your copay to be treated like such.

rob
05-18-2011, 01:33 PM
You know, I hear stories like this all the time. What the frak is wrong with these damn doctor/specialists? You are just faking it for attention? Does this a-hole accuse all of his patients of lying? I mean, that's what he did, he called you a liar.

My GP can't "officially" treat me for Lupus, but he writes me scripts for my Lupus meds and we discuss what's going on with me in regards to Lupus at every appointment. Call your GP and TELL him/her that you need relief from this pain NOW. Tell him if he won't do his job and help you, that you will find another doctor who will. As for that neuro, if it were me, I'd never go back to him again.

The way some of these people treat us is simply outrageous.

Rob

Peridot20_Gem
05-18-2011, 03:15 PM
Hi Amanda,

I am so sorry to hear this after you've been waiting so long and i can understand you crying because i would have been in the same plus full of flustration.

Well if he thinks you've never had seizure's plus faking them and also being an hypochondriac, well i'd go for suing the doctor or specialist who diagnosed you as an epileptic and also do him also for the way he treated you and what was said, all that's way out of order and he's disgusting for what he said in the field of work he does.

It's up to you if you want to try for MTX but it is an Anti-cancer drug for chemo therapy for cancer and they use the drug to surpress Autoimmune diseases that are reacting to quickly in such as Lupus besides.

If you go for this MRI and EEG as they cost money, my brain specialist did an EEG while i was awake, i had a new appointment telling me to keep awake all night and i was to sleep at the hospital while another was run and that showed my electric's to the brain running high during the night, these things have to be considered if you do have an EEG that does'nt show nothing while awake and if you want pay the extra cost for one while sleeping.

To me the whole situation is one complete let down after waiting such a while and the behaviour towards you in such a short time should be reported.

((Hugs to you Amanda)) xxx

tgal
05-18-2011, 03:35 PM
You know, I hear stories like this all the time. What the frak is wrong with these damn doctor/specialists? You are just faking it for attention? Does this a-hole accuse all of his patients of lying? I mean, that's what he did, he called you a liar.

My GP can't "officially" treat me for Lupus, but he writes me scripts for my Lupus meds and we discuss what's going on with me in regards to Lupus at every appointment. Call your GP and TELL him/her that you need relief from this pain NOW. Tell him if he won't do his job and help you, that you will find another doctor who will. As for that neuro, if it were me, I'd never go back to him again.

The way some of these people treat us is simply outrageous.

Rob

That is how I do it as well. I gave up on the specialist long ago! It is so much easier with my GP.

I am so sorry that you had to go through that. Sadly you are not alone. I wish I could reach out and hug you right now. It will be OK

Gizmo
05-18-2011, 05:41 PM
Amanda,
Neurologists (IMHO) are among the worst specialists for not believing their patients, especially women. I am so sorry he did that to you. Are your seizures related to lupus? I had a similar experience with a neurologist, and I did end up getting the expensive tests through him. I regretted it because he interpreted the tests himself, so I didn't feel confident that they were really normal. It's hard to start over, but you shouldn't put up with bad behavior by a doctor. If you DO go back to him, can your husband go along, prepared to stand up for you to this bully?

giggle
05-19-2011, 12:08 AM
Definitely do not go back to him and yes, put a complaint in! No one should be treated like that, even if you were a hypochondriac he should carefully and gently suggest you see a different specialist, a psychologist. Why on earth would he suggest you dont have seizures!!?? Why would a 25yo woman WANT to walk around with a cane and receive that kind of attention? Ridiculous. I was 24 when I had my daughter and subsequently diagnosed with lupus. I know I would have loved to spend my 20's as a typical vibrant young woman instead of feeling on deaths door constantly for the last 6 years. I will be 30 in a month.

You have to put a complaint in against him and put your foot down with your husband. It is pretty cold of your partner to insist you go back to someone that was so cruel.

steve.b
05-19-2011, 12:34 AM
sorry you had such a bad experience with a #*#$%*!#.

i agree do not go back.
see your primary doctor, have him help you, or refer you to someone who will.
tell him everything.
i would even ask for a long consultation, so you have time to go through your history.

Linda From Australia
05-19-2011, 02:21 AM
Have you paid your bill yet? If not, don't!
If they ask you why you won't pay the bill just say
"He said I was faking it, he told me there was nothing wrong with me .... so ..... He is faking being a doctor and didn't tell me anything .... so we are even"

adl011
05-19-2011, 08:33 AM
Thanks for being so supportive. I really appreciate it. I forget to mention the reason my husband wants me to go back. 1) so I can get the results of my mri to make sure ms is "out" of the picture 2) to take my old records where I was diagnosed 3) to hopefully get some seizure meds 4) so he can go with me to make sure the dr treats me right while we go through it all to get some answers.

I saw my gp this morning, and I left feeling great. He told me he still doesn't feel comfortable treating my lupus long-term, but that he will until I can get into a good rheumatologist. He is trying to rush me in within the next month to get into a rheumy 30 min away from home. He gave me prednisone 20 mg for 2 weeks then 10 and so forth bc he said I need to take it for a month before mtx, his partner is an endocrinologist and recommeded that, so I agreed and in a month I will start the mtx. The gp is hoping I can get into the rheumy next week with his insistance, but that's not 100%.

Gp also thinks I have renal stenosis. Ultrasound scheduled for Wednesday and we'll go from there based on the results. Anyone know anything about renal stenosis?

All-in-all I think today was successful. :)
-Amanda

Gizmo
05-19-2011, 02:08 PM
Yea for successful days! Here's hoping the prednisone helps you feel better while you wait for the rheumy. Your hubby sounds like a keeper.

adl011
05-19-2011, 08:19 PM
He definitely is a keeper. I'm very blessed to have such a supportive husband. As corny as it sounds, he's my rock. Always a shoulder to cry on, he works hard so I don't have to worry about not being able towork, clhe cooks and cleans the house so all I have to worry about is taking care of our son and going to school. I'm a very lucky woman!

tgal
05-19-2011, 08:27 PM
He definitely is a keeper. I'm very blessed to have such a supportive husband. As corny as it sounds, he's my rock. Always a shoulder to cry on, he works hard so I don't have to worry about not being able towork, clhe cooks and cleans the house so all I have to worry about is taking care of our son and going to school. I'm a very lucky woman!

That doesn't sound corny! It just shows that you are thankful for what you have (as you should be)

magistramarla
05-19-2011, 09:17 PM
Amanda,
I've been through this, too and I agree with everyone else that you shouldn't go back to that neuro. You're lucky that you have a good GP.
I had a great GP and rheumy back in Texas, and when I moved to Ca, I had all of my records and was already on meds.
My new GP said that "You might be a hypochondriac". The new rheumy seems to not believe or else she resents the diagnosis of my former rheumy.
She sent me to a neuro who treated me much like yours treated you. He seemed to think that I was just after meds, and he wouldn't listen to me when I tried to tell him that Lupus and Sjogren's can have neurological manifestations that can look like MS.
I'm just hanging in there until we move back to Texas.
Good luck with the new rheumy.
Hugs,
Marla

steve.b
05-20-2011, 05:09 AM
glad you had a good doctors visit.

Nat
05-20-2011, 09:10 AM
Hey Amanda
It's unfortunate that so many of us know what you're going through. I'm the same age as you and my first flare was horrible, I could barely move for days on end but my GP (who also can't treat me for lupus) sent me to the hospital where they did and its been under control since then. I hope you get some answers soon and you can feel better very quickly.
Best of luck!

kim,l
05-20-2011, 07:59 PM
hi amanda sorry to hear what you are going through i had similar experience with nuerologist he treated me like crap told me thought it was all in my head and i just needed to lose wait my rheumi told me he was a idiot and he would never send me to him again i know what it is like to walk with cane and i also have walker i am 46 but my mother inlaw is 79 and she cooks some meals for me and helps me with housework it can be embarrassing i know hope the prednisone works and your rheumi appointment goes well hugs kim l