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New Member

Date Joined Jan 2012
Total Posts : 9
   Posted 1/9/2012 5:06 PM (GMT -6)   
Hi My name is Shelly I am new. My daughter is 15 and has had so many problems and I am to the point I don't know what to do. It all started when she was in eighth grade. She got really sick with flu like symptoms. I took her to GP and they of corse said it was the flu. After weeks she ended up with pneumonia and finally after all that, her white blood count dropped really low 3.6. At that point Her GP sent her to a peditrician. Her biggest complaint was her back pain and her arms feeling so tired she couldn't hold them over her head to straighten her hair, and she slept all the time. So they decided to do blood work and she had positve ANA and two poistive Titers antiSCL and JO-1ab not very sure what this is and the only reason I found that out is I got the records. The peditrician told me at that point she had lupus and they were referring her to a peditrician Ruematologist. So I was thinking we were going to be in great hands. At that point she was put on Naproxen and flexerall. It took over seven months to get an appointment with the specialist. By this point she was feeling a little better not perfect though. First appointment with the Ped Rhu. we were told she definently had vasculitis and they started doing tons of blood work and x-rays. Well some how she ended up doing a MRI of the back and neck, which showed she had a synovial cyst between the L4-L5 and she had rt sided arthrpathy and mild degenerative disc disease in her neck and once again the only reason I know this, is I got the report from the hospital. Not yet has one doctor told me. So now to make a long story short it has been over 2 years and many ER trips For about anything and everything including blood in urine. We go to Ped Rhu. every six months for them to tell her she has fibro. Now she hurts everywhere she tells me everyday her bones hurt her joints hurt and now I think she is having gallbladder problems which causes her really bad pain. But because her ANA is now negative nothing is wrong with her. Her knees give out on her at least once a day her hands to me look like old womens hands more and more and "nothing is wrong with her". I have evan switched GP's and he says she is depressed. Well I quess so when she doesn't feel good ever. I have left out many more details that I am sure is important but its hard to remember everything. Oh yea she has broken her wrist I can't tell you how many times. I honestly do not know what to do.
The Ped Rhue. just tells her to exercise more. Well lets see she works at a horse barn she cheers for her high school competition team this year she works out all the time everyday and they know this. What am I to do????????

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/9/2012 5:25 PM (GMT -6)   
Find a new rhuemy ASAP!
This one sounds like a dud. The doctor should be communicating with you. You can't be suddenly cured of Lupus. It can go into remission, but not cured.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 1/9/2012 8:19 PM (GMT -6)   
Deffinatly get her in to see another rhuemy if it is a possibility where you live. She sounds like she needs to be on different meds that will control her symptoms more.

I also have been told by 2 very well known rheumys that Lupus can not go into remission. That it will go through periods of "laying low" or "being quiet" but never remission.
Lupus Moderater

dialysis from lupus nephritis

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 1/9/2012 8:49 PM (GMT -6)   
I agree with the others, you need to get a second opinion from a rheumy who is interested in having her feeling better. What you're getting now is nothing but a run-a-round which obviously isn't helping her health.

Check out to find the nearest chapter, then check their website to see which local doctors are on their board of directors -- those are the docs you want to choose from. They'll be the ones most interested in Lupus.

Hope you find better help soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Jan 2012
Total Posts : 9
   Posted 1/9/2012 9:16 PM (GMT -6)   
The Rhum. she has now is the only Ped Rhum in the state and I have called other Rhem. in the area they want see her because of her age, they only treat adults. Then we got the whole issue about health insurance. This is why I feel like I am stuck with this doc.

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/16/2012 8:13 AM (GMT -6)   
Unfortunately, there seems to be little "CONTINUITY OF CARE" in today's medical world. I think they are overwhelmed by the vast number of patients, not enough specialists & never enough time w each patient.
I know u prob don't want to hear this..but it slimness like she needs a COMPLETE WORKUP (start fro scratch) at a well-known clinic like the MAYO CLINIC.
I was diagnosed in a diff state (it.too. took.6 mos!) But when moved to where we are now I got in within a FEW DAYS (YES..DAYS) & I feel like I have top-quality care! I LOVE MY DR HERE! I have MCTD, FIBRO, RAYNAUDS. IM.41. My daughter is only 7 but I believe we are headed in same direction. She has had several health scares, is Asthmatic, broken both wrists, .. I don't like where we are headed. They can say this isn't CONCLUSIVELY GENETIC but my mom has this, I have it & I pray my daughter is spared!
Let us know what happens. Angelina

Veteran Member

Date Joined Nov 2009
Total Posts : 3266
   Posted 1/16/2012 8:51 AM (GMT -6)   
Perhaps I am speaking out of turn here, but I wanted to suggest that you look into Lyme Disease in your daughter's case. While she has probably had tests, the tests are notoriously inaccurate.

If you slip on over to the Lyme Disease forum on this site, we will discuss this with you.

It breaks my heart to hear of a young person suffering so much.
Co-Moderator Lyme Disease Forum
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