Arthritis - Juvenile Support Group

Hello, I dropped this group thinking that we weren't dealing with JRA, but now I am back, because even though I don't think it is JRA (yet), I do believe in my whole heart that she has PR, which is pretty close to JRA. The drs and treatments are the same too, if she gets the diagnosis.

DD has cont to have joint pains, but also numbness, tingling, pins and needles. But, I was also told that the inflammation (or micro) can pinch a nerve, and that causes the "neuro" symptoms.

Over this time, she has been nearly couch ridden once, I thought she would fall down when walking to the restroom. Other times, she has just limped through it. Or both legs hurt so much that she didn't have a limp, as she said one time. Ibuprofen helps some, icing the joints and cold baths helps, and keeping her out of the heat.

We got a new perspective with a female doc in the practice. She tested for A LOT of stuff, and put her on Doxycycline JIC she really did have RMSF (Rocky Mountain Fever), and it helped her for the whole time she was on it. She did have one evening of numb legs. She was even flare free for such a long time. Now, it seems to be slowly creeping back, but she had been doing so well, I thought we could drop our medical groups.

Then, someone pointed me in the direction of a syndrome, found by a Nobel Prize winner in the 1950s, that causes migratory, intermittant joint and tissue pain and micro inflammation, that usually shows neg tests. She showed "variable" inflammation in her rt knee that they ignored. Her tests have been neg except the strep and RMSF, which she has been treated for. And, it can be triggered by bacterial infections. I just got an xray of her left hip, because now THAT one was causing her a limp, JIC something shows up. It is called PR; Palindromic Rheumatism. LMK if anyone here has heard of it.

I read that 15% has it disappear completely over time; 33-50% turns RA, and the rest live with PR all their lives. Treatments are the same as RA if it is severe enough. I don't know how this translates to a child, but I have heard about a few child cases that are the same as my daughter's, and they were either Dxed with PR or JRA later on.

So, at least I now have hope that she may get a diagnosis afterall. Not all rheumys recognize the syndrome exists, just like some don't recognize fibro. But, that doesn't mean their pain is not there, it means one needs to find a rheumy that recognizes it, and can have an open mind to Dx the person if they believe they fit the symptoms. Even Doxy is used for it, and she was so well on it.

Also, recently, she has been put in PT for a month. The dr said her thigh muscles were slightly tight. The PT ladies said that her outer right thigh muscle was mildly tight, and her right hip joint is mildly tight. So, she is doing well in it.

The dr also did a back MRI and I haven't gotten the results yet. They did a brain MRI and EEG with the neuro, but those were normal.

Shriners called me back, and after I get the MRI results, I am suppose to call them back and see if they can help us. If they will, we are going to pursue it for several reasons. But, besides that, DD and I decided that we need to wait things out and see if it goes away. If she is in so much pain that she wants to go to the dr, which usually means bloodwork, then we will go. If I think that she has an actual infection (like last week when I thought she had strep again), then we will go. If she wakes up and can't walk one morning, then we will DEF go. And, if she seems to be out of it, and can't make the decision herself, I will take over my Mom duty. But, this is her body, and we are both exhausted. So, we finally had a heart to heart today about the whole thing.

So, that is the long of it. I think at this point, I am going to just be with this group, because I am SURE she has PR, or a juvenile form. And, this would be the more appropriate group. I have wondered about Lupus and MS, but there are several reasons I am sure she doesn't have those at this point. Kymberli
Posted on 07/30/09, 09:07 pm