What else can it be?

[NYRicanmom]

Goodmorning every1, Hope in GOD u all feel better.........i haven't logged in for quite a while, dealing with my daughter has been a challenge.  For a couple of months...lets say since mid January/09 she started complaining of lower back pain & the low part of the spine with severe ribs (both)pain, hip pain, leg pain and heel pain, since then hasn't gone at all away.  Besides all the other pain she gets from fms, ss and colitis.  Now for 2 months she can't sit, walk nor stand straight.  She is taking cymbalta, lyrica, plaquenil for pain but its not working at all, she walkds bended foward.  No remission.  I asked the GI doctor to pls check her cuz the pain its not going away, he insisted its all ss & fms, but I insisted for him to feel her ribs which was/is a quite swollen.  He send her for a MRI, cuz she is also feeling tingling, numbness and shaking of hands, face and legs.  The MRI came normal......Pls came some1 help with here, my daughter is deterioting, she is losing weight, walking with a cane ( i might have to get her a wheel chair), hair is falling, forgets things, kind of disoriented, hives and itchy, mouth sores, u name it.  Her Rheumatologist by the way is awesome...if some1 ever comes to Columbus, GA Dr. Meadows is the best!!!!! is working with us in finding out what she have.  I have done some research n is scary cuz many of the diseases takes years to show in mri and blood tests.  Like Ankylosing Spondiolytis takes years to show in x-rays after is advanced, etc.  I know u guys r busy with ur situation, but God knows I would be so greatefull for some advice.  Should I request a spinal tap and bone scan?

Thank you all
Blessings for all of U

[irish]

NYR, It sure sounds like your daughter is having a lot of issues. I am wondering if they have checked her thyroidd antibodies and her TSH. Thyroid disease can cause some very weird ailments. I know when my thyroid is screwed up I can hardly walk from the pain in my joints.

I hope that you can get ideas from others here that will help you. Sounds like you have a very good rheumatologist who is working with you. Has your daughter been put on any medication like prednisone or methotrexate? These are medications that help reduce the autoimmune response in the body which in turn reduces the symptoms. I don't know your daughter's age, but if she is young there is a specialty called pedicatric rheumatology that might be of some benefit. A hematologist or immunologist might also be of use. So many specialists and sometimes hard to find as they seem to practice in the larger populated areas.

Hope you find out what is going on. Irish

[NYRicanmom]

Thanks for the response.....my daughter is 18y/o.  I don't recalled the Doctor checking for it, but I will ask. And yes she have taken Prednisone, for the upper abdominal pain, ribs and pancreas(which at 1point was elevated).   Why if they feel some inflammation in the spine and ribs area it doesn't come up in the x-rays or ct scan?  Why is nothing is coming up?

[jonnell]

Hi my daughter is 4 and has sjs she has a lot of lower back and leg pain, but I wonder has your daughter been tested for MS or Lupus?  I sure hope you find a answer soon, I know what it is like to have a child in pain and you cant make it go away.  Hugs and Kissess   Jonnell and Jenna

[Linda196]

NYR, if they feel the pain is the result of inflammation, and nothing is showing up on x-ray, they might consider a Gallium scan, which highlights areas of inflammation in any tissue including bone. It may give them a better idea what tissue is involved, and based that, how to deal with it.

Meanwhile, has she had bone density scans done? I know she's very young to have to consider osteoporosis, but she has been taking a steroid, and some people react more to the bone thinning properties of steroids than others.

[Dolly Dimples]

  NYR, I am so sorry to hear about your young daughter..

It must be so hard for her to cope with all of this at such a young age.

  I hope you follow the knowlegable advice of the  (in my opinion)  2 of the best   members of this site in Irish & Linda, although all of them are lovely , kind sympathetic peeps here..

    Pray you get some answers soon, and God bless you both, Dolly x

[Patze]

Hi NYR,

I'm sorry that your doctor is having so many problems, and I hope that she finds relief soon!

Irish & Linda have some good ideas and there's not much I can add.

Hang in there and I'll keep your daughter in my thoughts and prayers.

Take care and hang in there, okay?

Patze