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shepherdgirl
07-07-2009, 07:14 PM
So I have my third opinion appt tomorrow. If you're keeping count, the first rheumy said I did have Lupus (mainly based on positive dsDNA), second one said maybe, but I was mainly "preoccupied with bodily functions" and rx'd Xanax and Zoloft. I'm seeing a UT Physician that is supposed to be really good.
I'm wondering if you all have any suggestions about questions I should ask, things I should take with me, etc.
I've had my other rheumies fax in my progress notes, labs, xrays, mri, emg and other stuff. My PCP faxed in her stuff from the first time I saw her until this past visit when I did a recheck on my thyroid. The dr. should have every dr's note from April. Not sure if that's a good thing, but that's what he requested.
I am debating about taking my list of symptoms. I don't want to seem like a hypochondriac by walking in with my list. The last rheumy didn't look too kindly on the list.
What do you think? I really want to make good use of this appt.
Thanks!

rob
07-07-2009, 08:37 PM
To put it bluntly, take your list, and stand your ground. Doctors are trained to evaluate people, some are good at it, some are not. You have recieved two opinions so far based on the asking of questions. Try seeing this Doctor and instead of asking questions, state what you believe to be fact. Tell him/her that you, through others opinions, and through your own research, believe that you have Lupus. Sometimes, a good Dr. or Rheumo will consider that, and look at your situation from a different point of view. We, are not medical professionals, but they, are not possible Lupus patients either. There is common ground to be had, but sometimes we need to help others, Doctors included, to see things in a different light.

Rob

Monique89
07-07-2009, 08:41 PM
I really hope that this doctor has some of the answers you are looking for
I would take the list in too, sometimes once you get into the doctors, you just forget everything you were going to say, or mention etc.
Good luck hun xxxx

Angel Oliver
07-08-2009, 07:19 AM
Yes take a list of symptoms so you remember and like Rob said stand your ground.Dont be intimidated by him or her.Goodluck.

love Amanda.xxxxxxx

shepherdgirl
07-08-2009, 07:24 AM
Printing the list. Thanks!

debbie-b
07-08-2009, 08:07 AM
So I have my third opinion appt tomorrow. If you're keeping count, the first rheumy said I did have Lupus (mainly based on positive dsDNA), second one said maybe, but I was mainly "preoccupied with bodily functions" and rx'd Xanax and Zoloft. I'm seeing a UT Physician that is supposed to be really good.
I'm wondering if you all have any suggestions about questions I should ask, things I should take with me, etc.
I've had my other rheumies fax in my progress notes, labs, xrays, mri, emg and other stuff. My PCP faxed in her stuff from the first time I saw her until this past visit when I did a recheck on my thyroid. The dr. should have every dr's note from April. Not sure if that's a good thing, but that's what he requested.
I am debating about taking my list of symptoms. I don't want to seem like a hypochondriac by walking in with my list. The last rheumy didn't look too kindly on the list.
What do you think? I really want to make good use of this appt.
Thanks!

Preoccupied with bodily function? What the heck? I think he would be preoccupied by HIS bodily functions, if they where screwed up like ours. I hope you finally get the answers you need to get help.

Debbie

gina
07-08-2009, 08:57 AM
Good for you. take the list it will help you to remember all of syptoms. i almost everytime forget mine. put in purse now.

good luck with this dr. hope their the right one for you.

Oluwa
07-08-2009, 09:58 AM
I was watching a talk show..which one..hummm.

But anyway...the interviewee was a doctor. She said ask all your question while he is sitting and not as he is about to leave. Don't say oh, oh, by the way..oh, oh I forget...She call it a door knob response. Basically he is not into you and his mind is on his next patient as he stands up and turns the door knob.....so ask all the questions on your list, at the time he is sitting.

Too...when through, if he suggests or diagnose what it is that is ailing you, ask the doctor could it be anything else, because a person could just be that rare case.

And that is all I learned so far today..oh, and don't mow with rubber gardening clogs. You're ankles turn green. Was trying to save time, a movement this morning. Didn't want to bend and put socks and rubber boots on...and just slipped into those.

Love,
Oluwa

mountaindreamer
07-08-2009, 12:00 PM
ooooh oluwa,

green ankles....wonder what you wil wear to match those? I knew there was a reason that i did not wear clogs....now i know.

shephardgirl,

you are probably at the dr. by now...hope everything is going great with new dr. Fill us in on details when you get home.

magistramarla
07-08-2009, 01:23 PM
Shephardgirl,
You know the saying, "You have to kiss a lot of frogs before you find the prince"?
During the last three years, I've seen a lot of doctors, and all because my PCP noticed slightly raised ANAs and was the first to suggest that perhaps I had "some form of Lupus". It took me a long time to find a great Rheumy, and I had to wait 6 months to see her. She was worth the wait, though!
Good Luck. I hope that this one gives you some answers.
Marla

lagrace
07-08-2009, 01:51 PM
Good luck on your appt. tomorrow. I will be thinking about you!:cute: Let us know how it went!

Lisa

Pearl
07-08-2009, 06:29 PM
Was the third time the charm? Sometimes, it takes WORK to find a competent physician who will really pay attention to what you are saying.

I went through three myself. I am finally working with someone who believes in me and who focuses on my health at every turn. When you find a physician who cares about restoring your quality of life to the best extent possible, then you have found a winner. Keep looking until you find one.

shepherdgirl
07-08-2009, 10:36 PM
Well, I'm having MORE tests run. This time it's a lupus panel, along with several other things. He spent 2 hours with me, talking about my symptoms. I went over each and every one with him. In the end, he said I was a "mystery case".
When I asked if he thought I had Lupus, he said he didn't know right now. Basically, he said I have a lot of uncomfortable symptoms, one could stretch them into the criteria for Lupus, but they don't fit neatly in. He's wondering if there might be something else causing it.
He repeatedly asked what my neurologist said and how my tests came out. I think he's thinking this is more of a neurological thing.
He spent about 30 minutes trying to figure out my sciatica on my left leg. I get it for weeks at a time, it's disabling. He found a swollen area, he thought it could be bursitis, but it was a little to the side. In the end, he decided it was periformis syndrome. He decided not to inject it today due to the odd placement of the swollen area. After he talks to his boss, he will decide if an injection is OK. I was happy that they are taking this slow b/c it is a botox injection. If they miss, it could be a problem.
In the end, he seemed legitimately concerned and honestly trying to help. I am getting my blood done tomorrow and return in 4 weeks. They will notify me via mail or phone call if the results are abnormal.
I feel better about this guy, he seems like he know what he is talking about.

Rastagirl
07-08-2009, 11:38 PM
I'm so happy to hear this news Shepherdgirl. You finally found a thorough doctor who was willing to spend a good amount of time with you....and didn't dismiss any of your symptoms....or tell you you're preoccupied with this.

In my humble opinion, any doctor that is willing to spend 2 hours with you on a first visit...and actually listens to everything you have to share...and tries to be thorough and careful with his options for treatment and his plan of action, is a good doctor that is worth your time and money. In my experience with seeing hundreds of different doctors over my 27 years with Lupus, I have learned to trust my 'gut' feeling about them. If you feel comfortable with him and your gut tells you that this is a good match and you feel like he wants to help you with your health needs at this time, then work with him and try to build a relationship that will be a partnership in getting you as well as you can be.

It sounds like he truly wants to try to solve the mystery of what's going on with you...and that's a very important start. It is crucial to find that doctor that has the time to be thorough and has the knowledge and expertise to look at all the possibilities, and come up with a plan of action in helping you get better.

Did you talk to him about your joint pain that comes and goes and find out if there are any options to help with the pain when it becomes disabling? Just curious, because I hate to read when you're truly suffering and don't have anything that will help with that.

I'm very happy for this positive news for you...I'll bet you feel like celebrating a bit. :veryhappy: Even though you don't have a concrete answer yet, you've at least found a doctor that seems to care and is competent. Two very important qualifications for any doctor!

Hugs to you... :hug:

Fondly,

:cool2: Lori

justomegirlindallas
07-09-2009, 05:36 AM
I'm really glad to hear you're getting a 3rd opinion but some tips to hopefully help you make the most of this appointment.

...

get all of your records and review them yourself. This will help you to feel more in control of your medical situation. Do not be surprised if you find a lot of minor errors on your records.

You sound like a smart lady - once you get your records, spend time going through them and outline everything on no more than two pages. If you go into the doctors office with a stack of medical records and hand them to the doctor, you're likely to get a blank stare in return.


There are some things you can do though so that your appointment is smoother one of those things is to create an outline of what is bringing you to see the doctor. (Since it sounds like your doctor is needed for chronic illness an outline may be the best format.

You may need to adjust your little outline for your particular problems but the point is, keep it simple and relevant. Review your outline several times before you see the doctor and a final time before your appointment.

1. Summary of why you're there to see the doctor. Keep this short and sweet but make sure you cover all points that are important to you. Include how your symptoms effect your quality of life, when you noticed their onset and any patterns.
2. Medications
3. Significant events (surgeries, major infections, hospitalizations, diagnosis, congenital defects etc) Keep these bullet point one liners with approximal year and/or year and month. You can always elaborate with the doctor or refer to med records as needed.
4. CT Scan / MRI / Ultrasound clinical impressions (etc) and with a date stamp. Bullet points!! Include any impressions whether or not you think its relevant. You can always elaborate with the doctor or refer to med records as needed.
5. If your symptoms are remitting/relapsing - recount as best as you can a full "cycle" worth of symptoms. keep this as bullet pointed as possible. It helps to carry a little calendar with you and write down the course of your symptoms. If you went to the doctor during these times - what were the vitals / UA results etc)
If you have joint swelling, edema, rashes etc during this period of time- take pictures. Include them with your two page outline if needed.
Do be sure to include any mental problems you may be having during these times as they're very relevant to many different types of chronic illnesses.

Do not forget that lifestyle habits are just as important as your lab reports.

Keep a copy of your outline for yourself to refer to so that if there are areas you want to elaborate on during some point of your visit. On your copy also include your questions ahead of time.
Your doctor will most likely ask you specific questions and not want to look at your outline immediatly and that is ok. You use your outline whenever he/she is done questioning you.

crmj1183
07-09-2009, 06:21 AM
shephardgirl,

I hope you get some answers. I will keep you in my thoughts.

Chriss

shepherdgirl
07-09-2009, 01:20 PM
Thanks! I really do feel like he is going to be helpful. I told him about my joint pain, fatigue, everything. I'm hoping the extra information will turn me from a mystery case into a diagnosed patient (no matter what diagnosis it is).
Anna-Thanks for the layout for my appt notes! What a great way to organize everything!