Help! - 12 year old RF + IgG 92.9 IgM 20 IgA 24.8 - but CCP test negative - symptoms of RA in Spine - but doctor thinks we are crazy!

[lisamichel]

So its been almost a year trying to figure out what has been wrong with my daughter - it started out last July (2019) with symptoms of dizziness, slight back pain, and numbness and tingling - we have now progressed to severe back pain (like she can't take it anymore) with more dizziness and now legs and her body going paralyzed and she passes out along with her eyes getting red and looking like they are bleeding along with this severe back pain that comes and goes. We have seen every doctor known to man with no diagnosis and finally with this severe back pain that showed up in May (2020) we went to our Ortho and they did an MRI and found some issues in her back - 4 vertebrae that are having slight disc issues and then mild inflammation in a few joints in her thoracic spine and then a few joints in her lumbar spine. Ortho did some more blood work and we just got the results back yesterday and her Rheumatoid Factor's are all abnormal - but her CCP is negative or low - only 6 - all of the other symptoms she has been having this last year all point to RA along with its seems to be like she is having "flare ups" - 3 weeks ago she had severe back pain, dizziness, the red eyes etc but now 3 weeks later its like she is in remission - We are new to this but the Rheumatologist we went to thinks we are crazy and its all in my kids head - I'm a scientist and I'm not stupid but obviously I have read a lot of information and talked with a lot of people and I have read that you don't always have to have a +ccp for it to be RA - Especially in Juvenile RA where studies have shown more than half sometimes 3/4 of kids don't have a +ccp but have a +RF test especially when the RA is in the childs spine - I'm sure this is affecting her nerves in her spine and thats why she is having neurological symptoms as well - Literally yesterday her whole body went numb/paralyzed and she passed out - thank god she landed on her bed - I'm scared that this is getting out of control and causing major damage to her body and no one will take us seriously - She now has floaters as well in her eyes - a new one showed up 2 weeks ago when she had the bad flare up - I'm worried about her eyes as I know JIA can affect the eyes as well - Any one else ever gone through this!!!!

[clairem87]

My gosh what you have described must be terrifying for you and your daughter. It doesn’t sound like your crazy at all you need to second opinion. My son had been in pain and cried from the day he was born and our Hospital said I was mad and I should take him home and deal with it, it wasn’t until we saw someone completely different who diagnosed him within a second with JIA it took nearly 2 years of hell to find out. Keep on at the doctors you need answers.