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!!!!
12 Year old daughter +RF- IgG 92.9 IgM 20 IgA 24.8 bu... - NRAS
12 Year old daughter +RF- IgG 92.9 IgM 20 IgA 24.8 but CCP Negative - but many symptoms of RA - DR. thinks we are crazy.
I presume you have been referred to a Paediatric Rheumatologist?
If not do ask to see one......they are much more likely to have seen something like your daughter is suffering from than adult treating rheumy.
Depending where you live maybe you could try Great Ormond Street Hospital?
Sorry I can’t be more helpful.....
I have connections for her throughout most of England once I know her location. Certainly Liverpool NHS has an excellent pedi rheum and London I know for sure. I also have a source for Cambridge.
Please have her checked for Antiphospolipid syndrome. I had the same RA panel. I also had APS. Even as a child as we now know. She has all the symptoms.
Thank you - I definitely will - this has been a long road for us and I'm not giving up on getting her treatment! - To the previous person's post also - yes we went to the Pediatric Rheumatologist and she is the one who is dismissing us - thinks this can't be JIA at all -
Well, APS would fall under Rheum and hematology.
Where are you located?
Also, does she have migraines and bouts of nausea?
She used to get lightening headaches but those have gotten better
I can't like your post darling because of the suffering your going through. Keep on pushing darling. Hugs to you all.xxx
You have had some good answers but another to consider is an opthomoligist as they will check her eyes about these floaters.their experience will add to help you
We have been to the opthalmologist and everything was ok but we are going back again to check tear production
Fra 22 knows can help with APS also
Hello Friend!
What do you think? Worth ruling out APS in this young lady?
My RF factor was 512, where 7 was normal on the test parameters. But no actual Rheumatiod arthritis per se for years. Now it’s hit me ...
But APS- yes. As you know all too well- often goes together.
APS can hit the young!
Yes definitely! I'm going to ask them to add any blood tests fir that!
Just on the off chance- but it can be negative and then posit, so keep an eye in the future.
Definitely Kelly..it needs exploring
Thank you everyone. We just got blood drawn. Now we wait again. I feel for all of you going through this process as well. It's exhausting! Now I need to go call opthalmologist.
Dear Lisa Michel
I’m so sorry to learn that your daughter is suffering like this. My granddaughter too has been on a long journey of discovery, although not all her symptoms have been the same as your daughter’s, some have. She is fourteen and from being very young has had great difficulty with painful toilet functions. She complained of migraine like symptoms, severe pain in her knees (sporadically) and itchy & red eyes. The most debilitating symptom was the almost constant plague of mouth ulcers. These could be huge, some as big as a finger nail. On occasions they would also affect her lower region, making it agonising to pass water. Having sought urgent advice from many physicians over the years and after many x-rays & MRI’s showing nothing significant, eventually a young and newly qualified GP suggested his suspicion of Bechets’ & referred her to Manchester Children’s Hospital. The affirmative diagnosis of Bechets’ is by illumination as there is no direct test. After six years of heart wrenching inconclusive testing she was finally diagnosed at age 12. This is an incurable, lifetime syndrome affecting the immune system that, thankfully, is now under control using biological anti TNF. She is now under the excellent care of Liverpool’s Alder Hey Reumatology and Bechets’ Centre of excellence. I’m sorry to be so long winded but having been on our unbelievably obscure, confusing & emotional journey I understand your concern & sense of urgency regarding your daughters condition. Only by shear persistence were we able to achieve diagnosis and control of this ultra rare condition. The symptoms are wide ranging and never could we have imagined, at the start of the journey where it would eventually lead. I know that your concerns weigh heavily on you right now but I have no doubt that your will & determination to pursue a diagnosis and positive outcome for your daughter will prevail. Good luck to you and please keep us appraised along your journey. 🙏
Thank you! Thank you everyone! I will not give up on thus. The other possibility they are thinking is Sjorgrens syndrome but she doesn't have dry eyes or dry mouth but she does have dry lips and gets nose bleeds a lot. We are going for more blood work this morning.
A Rheumatologist said that!!!!They should be struck off. That is appalling. Your daughter needs treatment asap. Don't be fobbed off. Ask for a second opinion. Good luck x
Yes a rheumatologist said that. I was appalled too. We are in Colorado and that was the Rheumatologist at Children's Hospital! I would love a second opinion but I have called everywhere and it seems the only pediatric Rheumatologists are only at Children's. Ugh!!!
Can you not still ask for a second opinion? Presumably there are several Rheumatologists in the hospital. You just happened to get one who shouldn't be. Keep trying. I don't know how your system works in US. Here you are entitled to a second opinion. You will no doubt be paying for your medical care but they can't just leave a little girl suffering like that. I am really cross on your behalf. Keep trying. The next one will be understanding and helpful. They can't all be heartless. x
Yes I am totally going to ask to see another doctor as well! - I also am getting her medical records together as there is another place here called Colorado Arthritis and Osteroporosis clinic and I called them and they don't usually see teens (almost teens) until the age of 16 but the Director will review her records and they can make exceptions as they do have someone with a background with children - they were really nice over the phone and couldn't believe the pediatric rheumatologist either! - I'm hoping to drop off all her records here on Monday and hopefully they will see her too. Children's Hospital does have numerous Pediatric Rheumatologists but they all kinda collaborate together - not sure if I would get an unbiased opinion with another one. I'm really shocked at the need for Pediatric Rheumatologists outside of the hospital setting - there just doesn't seem to be really any - Someone could have a great practice doing just that!
So done of the new blood work has come in. I'm hoping you guys can help explain some things. So the first RF test we had tested the IgG. IgM and IgA and they were 92.9. 20 and 24.8 respectively. The RF test we just got back says <8.6 or negative. It doesn't have all three tests. What does this mean? Are there different tests fir RF ?
Not what you're looking for?
You may also like...
Advice on seropositive RA for my 12 year old daughter, really worried.
seropositive RA 8 yrs ago, now seronegative?
Has anyone else been told that they're \"not sick enough\"?
Atypical sero-negative RA presentation…anyone else?
Suspected for early RA
Completely devastated after second opinion - now the suffering will never end
RA Doctors never tested my blood
RA diagnosis - follow up
Does this sound like RA?
Just had 1st appointment with rheumy nurse.
