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Life With Lupus

What do I ask the doctor at the first appointment?


#1

My 15-year-old daughter had blood work done that indicated a positive ANA result and the titer was speckled. Don't really know what that means. We have an appointment scheduled with a rheumatologist tomorrow. Her symptoms are fatigue, headaches, hurting all over in joints & muscles, chest pain, occasional stomach pain, dizziness and cold all the time.

What sorts of things should I ask about at this first appointment?


#2

Hi! I completely understand your concerns but as someone that has lived with lupus for 23 years I also want to assure you that - should they determine that she has lupus- it’s very manageable with quality care. The first thing I would ask for is a full blood panel and urine screen as false positives (and false negatives) are a part of our lives. Then make them explain the results very thoroughly. You’ll learn a lot about ANAs, ESRs, complement levels and all that other fun stuff pretty quickly and it’s important for you and your daughter to come to recognize her baselines. It sounds like she needs immediate help to alleviate her symptoms. There are so many wonderful drugs and nutritional programs to help us but sometimes those take awhile to kick in. Don’t be afraid to advocate for what you think she needs, be it testing, drugs, or even massage therapy. Overall I’ve found that drs have gotten better in recognizing that we really ARE tired and in pain, but I’m so glad that you’re with her to help her verbalize this! I personally love that we have so many online and local support groups now and find a referral to these helpful as well. And don’t forget your own needs while you’re at it. Caretakers are under a tremendous amount of stress as I have seen in my own family. Do you have a good lupus center near you? I live in Boston and have access to several but I know they are becoming more prevalent nationwide. A good lupus center is important because even the silliest seeming things need extra attention for us. For example, a lupus referred dermatologist was able to determine that what I thought was acne was actually an acute toxic reaction to a drug. We get fun stuff like that :-). But most of all: referrals, referrals, referrals. By seeing specialists from the beginning you can at least have the upper hand in prevention from the things that really make us sick such as major organ involvement. I have found that by educating myself and surrounding myself with professionals I’m able to live a very fulfilling MOSTLY healthy life. I truly wish you luck!


#3

Still learning lot about this myself, however the one thing I know is ask questions if you don’t understand what the doctor is saying ask him to explain it again and again until you both do. If you don’t feel comfortable with the first doctor then ask for a second opinion that is your right also. Talk to everyone ask questions don’t be afraid to ask and talk. Tell your daughter the same it’s scary at times but talking to the doctors and friends family helps. Good luck to you both.


#4

We're in Austin, Texas. I don't know if there are any lupus centers here, but I will look around some more. I forgot to mention along with her symptoms that she has not been to school since the first week of December. She is an excellent student at a private school with good friends and she misses it, but she doesn't feel like going. She kept up with her school work through Christmas, but is further behind now.

We don't have an official diagnosis of lupus yet, but I think that is what it will be. Especially since her chest started hurting about 3 weeks ago, I've thought lupus is what we might eventually hear.

Anyway, I appreciate your comments and will make notes to ask the doctor tomorrow. Thank you.


#5

Sounds like pericarditis, which can be very painful. I’ve been in the hospital with that a few times and it’s very debilitating.


#6

YES, tell him about all her symptoms, lupus sle patients always have a myriad of symptons,,,,,also for the pain and inflamation, as the doctor to prescribe her some prednisone, and also percocet 10.mg....this will help the inflamation and the pain, and some of the fatigue ,as for the cold, have her get soft diabetic socks, and also when i get really cold from the lupus, i wear soft gloves, and even a knitted hat, god bless, if you want to talk email me at (email address removed by modsupport) ....i have had lupus sle for 21yrs now


#7

Cat’spaw1955, I’ve removed your email address from your post to protect you for scammers who might be lurking. Please click on the butterfly icon to the left of Mammapooh’s name and send it to her in a private message. Thanks.



#8

Take a pen and paper or record the visit. A lot of information to remember. Your daughter is very fortunate to have your support and love. The dr. Will want a list of meds she is on currently, and will probably set up tests that she has not had yet. I think the most important information is all your daughters symptoms this helps the dr. To know what treatment … I wish you and your daughter the very best.


#9

Does she have a fever?

MammaPooh said:

We're in Austin, Texas. I don't know if there are any lupus centers here, but I will look around some more. I forgot to mention along with her symptoms that she has not been to school since the first week of December. She is an excellent student at a private school with good friends and she misses it, but she doesn't feel like going. She kept up with her school work through Christmas, but is further behind now.

We don't have an official diagnosis of lupus yet, but I think that is what it will be. Especially since her chest started hurting about 3 weeks ago, I've thought lupus is what we might eventually hear.

Anyway, I appreciate your comments and will make notes to ask the doctor tomorrow. Thank you.


#10

Thank you. That's a lot of good advice. I can't get her motivated to do anything right now, but her attitude still seems good. She seems to be waiting to feel better to make up her work and go to school. Mostly the last week she's just felt validated that something showed up on the bloodwork, proving she's not faking it, not crazy, not depressed, not being bullied at school --all things that have been brought into question the last few months. She trusts me to do the research and take care of her and make sure she gets well. In other words, reality has not set in yet.

Thanks for welcoming me to the community. I'll let you all know what the doctor's opinion is after we see him today.


#11

Of course she’s not faking it or crazy, MammaPooh. It’s hard when you come down with symptoms that you don’t understand and which affect everything that you do and used to enjoy. Being in that kind of morass can led to depression. Here’s an interesting bit from Mayo:

http://www.lupus.org/answers/entry/can-lupus-cause-depression

Have you suggested that your daughter prepare some questions for the doctor as well?

Good luck today. Do let us know how things go.

Seenie


#12

Someone asked if she had a fever....Over the last few months she has thought she had a fever, but it has never registered above 99.0. I suggested she take her temp at times when she didn't feel feverish, particularly in the morning. My temp tends to run low. She's now established that her temp normally runs about 97.4. So, in my opinion, and hers, yes, she's had a low fever. I've never had a doctor before that recognized that normal can be significantly lower than 98.6 so that when it is 98.8, for example, it is really a degree of fever for that person. So we'll see what this new doctor thinks. Also this pediatric rheumatologist we were able to get in with is an osteopath. Does anyone have any experience with osteopaths?


#13

Well, we’re back from the rheumatologist appt. for my daughter. He seemed to have made up his mind before he walked in that there wasn’t anything really wrong. He is doing more testing, but he suggested that there is some traumatic event that has affected her and is keeping her from school. I just don’t know what it could be. She is an excellent student, she has wonderful supportive friends & teachers, etc., in a private Christian school where her dad works and all her siblings attended. She insists there’s nothing wrong in that sense, only physically.
The doctor did say that she reacted strongly to all the fibromyalgia trigger points and she might be headed that direction. He thought her positive ANA was positive simply because her thyroid AB was positive (but her TSH, T4, & T3 are normal so far). SO…I’m not sure where to go from here. I do have an appointment scheduled with a nutritionist and a neurologist as well, but those are a ways out.


#14

I was diagnosed 5 years ago. I was ANA negative at first , put on plaquenil for a year before Rheumy (same one) officially said SLE after dermo test. I have almost e very specialist in the book. Keep searching for a dr that really seams to care. Some want to say stress, depression, etc, but keep pushing. I don't know of any support groups locally. I live near Nashua NH. If anyone knows of a group in my area please let me know. I now have Reynauds . Keep your WHOLE body warm. Tell DR of EVERY symptom you have even if you don't think its important.

Good luck Everyone has given you good information.


#15

Osteopaths are the same as doctors. In my experience they make a conerted effort to communicate with the patient vs. MD.
MammaPooh said:

Someone asked if she had a fever....Over the last few months she has thought she had a fever, but it has never registered above 99.0. I suggested she take her temp at times when she didn't feel feverish, particularly in the morning. My temp tends to run low. She's now established that her temp normally runs about 97.4. So, in my opinion, and hers, yes, she's had a low fever. I've never had a doctor before that recognized that normal can be significantly lower than 98.6 so that when it is 98.8, for example, it is really a degree of fever for that person. So we'll see what this new doctor thinks. Also this pediatric rheumatologist we were able to get in with is an osteopath. Does anyone have any experience with osteopaths?


#16

Does anyone have any experience with a rheumatologist saying that a positive ANA 1:320, speckled pattern with ongoing symptoms (of fatigue, muscle/joint pain all over, headaches, cold all the time, dizziness, brain fog) isn't indicative of active autoimmunity?

I'm so frustrated. What do I do now?


#17

So the rheumatologist isn’t sure that she has Lupus?


#18

1:320 is NOT a strongly positive ANA. (1:640 draws attention) It bears watching but is not significant in terms of Lupus with out some other factors. The speckled pattern is seen in many conditions and in people who do not have any autoimmune disease. In a 15 year old it could indicative previous mononucleosis or in a teen girl fluctuating estrogen levels. If she has not had her first Gyno appointment and follow-up I'd start there in addition to what you are already doing.


#19

Correct. The rheumatologist says there is nothing wrong. He seemed to have made up his mind before coming in the room that there was nothing wrong. He rapid-fire question her dad & I about possible traumatic events that might have triggered all this. Even stopped and said, OK, what are you not telling me. He was surprised when she reacted strongly to the fibromyalgia trigger points. He all but said she is faking that reaction as well as her symptoms. He was also surprised when he asked about autoimmune disease running in the family. Yes, Parkinson's, 2 with PCOS, Crohn's, and Hashimoto's. He is running more blood work he said because he had to since we were referred to him, but then said he doesn't expect anything to turn up, and don't expect to hear from him or do any follow-up.She already tested negative for mono. He said it might all indicate that she is heading toward developing an auto-immune in a few years.

It's just so frustrating! My daughter is a straight-A student at a private Christian school with great friends and teachers she's grown up with who she loves and who love her. She was active in band, choir, and drama, and teaching in the nursery in our church. She is excited to be helping her sister plan her upcoming wedding. She loves to sing and dance and shop. As a family we are very close. Why do so many in the medical profession jump to psycho-analyzing and assuming that we're hiding some dark secret. This happened with one of her sisters too a few years ago when, as it turned out, she was actually suffering from TMJ, multiple food sensitivities, and a torn ligament in her ankle.

I don't know that it is lupus; I don't want it to be lupus, but something is physically wrong.

ModSupport said:

So the rheumatologist isn't sure that she has Lupus?

#20

I guess the lupus question come because you are on a lupus board......

Its not so much psychoanalyzing as it is not an uncommon occurrence with girls that age Mod-support (Seenie) is pretty experienced with that group of kiddos. Crohns is pretty concerning and certainly bears some follow-up. If at all possible get her to a pediatric rheumatologist. They are hard to find but worth the effort. They see things through different eyes.

I will warn you however that things can get very wonky with this age group and one of the more common things that happens is a heightened pain response especially with high achievers. It takes very little to throw them off. The pain is very real although the cause is often elusive. My wife was a Christian School teacher for many years (along with many in the public system) and will tell you the pressure Christian School kids experience is many times greater than their peers in the public system. Expectations are very high. That's not any kind of an indictment of the choice you as a family have made. We made the same with our 10 and would never have considered otherwise. Just be aware of the extra expectations.

Obviously you want and your daughter deserves answers. They may just not come easily. From my experience on a practical be empathetic BUT don't let this thing rule your family, if you do it will get worse. As hard as it is when you see your baby suffering, for family and her you have to say I know honey, but even if you hurt today, you still have to XXXX. Keep expectations appropriate. This will pass. Allowing her to give in to her illness no matter the cause will make it worse.

Early menses has had a huge effect on teen girls these days as those raging teen hormones are developing at different points than ever and not consistently. bets of luck to you. I sincerely will send a special one up tonight. A wedding and this wow. You must be super human. Seriously. Please stay in touch Lots of experience here. While our experience are real, they are not necessarily yours.........

Incidentally your daughter sounds like mine. We went through it with her too. It passed about age 17 as quickly as it started She went on to graduate as an academic all American, played professional Tennis, entered full time Ministry and went to part time when she became a family court judge. We are attending her wedding next week in Key West... Her problems came to an end when she got shingles..............

As far as the trigger points exam, the docs look very closely at the reaction and at what point the patient reacts. It is a skill the develop over years. Inflammation is a strange beast. If you watch a really good doc doing an exam you will notice he is looking at his finger nails as he palpitates those points. He is watching to see how much white is showing. It tells him more where the inflammation is at than an MRI can. No they are not "faking" they simply are not responding they way they would if certain conditions are present.