Pam,
Sorry to hear about your troubles. It has frightened me to learn that medicine is NOT an exact science -- it often seems like they have to just make "educated guesses" and judgment calls. Obviously something is wrong, so don't give up. It really helps if you can find a doctor who will really listen because you know yourself and you know your child better than anyone. Good luck to you!
Hi Pam,
I wish you luck finding some help for yourself and your son. My grandmother had RA, I have RA, and my daughter often complains of joint aches. I've had her tested a few times, but results always came back negative. I just keep taking her in, keep arguing with the doctors, etc. One of these times, I'll run across one that will listen. I'll just keep trying.
Cris
Pam,
I have not had all the problems you desribed your son has had; however, we do have one thing in common from my childhood, aching knees. When I was about four, I starting having deep intense aching in my knees. It was so severe that I would cry but I never had any swelling or redness. My mother took me to a doctor and he said I had growing pains.
Unfortunately, no one ever really did any testing and by the time I was in high school, I also had the aching in my shoulders. It never kept me from doing anything but it was very uncomfortable. In my early thirties, I was diagnosed with hypothyroidism. It took two years to get that diagnosis and I was miserable the entire time. In fact, I truly believed that I was terminal (as dramatic as that may sound) and that no one wanted to help me. After a change in insurance and change in doctor, we finally figured out that I was hypothyroid. Because my doctor couldn't control the hypothyroidism, I was sent to and endo. The other problem that coinsided with the hypothyroidism was aching in all my joints; it had spread and intensified.
The reason I am telling you this is because now in my fourties, I am being told that I probably had JRA when I was a kid, a mild case but painful all the same. Hang in there with your son. Hopefully he won't wait for what seemed like a life time to find out that he had a problem.
I have been very fortunate because even though my problem has spread, I still have a mild case, no swelling, no redness, no positive RH factor; however, my rheumatologist is very firm in is belief that I need to be treated for RA. Hang in there and good luck.
It is so nice to have a place to go and compare notes with others who suffer from the same disease. It has been so frustrating to feel like something is wrong and not have anyone validate that belief. Believe me, I even volunteered for a psych eval just to try to get someone to believe me. Good luck!
Thankyou all for your kindness. I have read so many personal stories now, and I have to say it is sad to see the percentage of people that are treated like there is nothing wrong with them prior to finding out they have RA. It would seem that a Rheumatologist would be more apt to say that what your experiencing could be the beginning stages of RA, we'll watch you closely and see how things progress.I just don't get it.
Cristene, I actually had read your post earlier and had planned to reply as I noticed the simularities to Oscar's problem. I don't think everyone gets redness, heat and swelling with the pain from RA. My cousin who is now in his 50's was diagnosed with RA in his 40's. They think now that he too has had it since early teenhood and went undiagnosed until it bacame so bad as an adult. Also my father's cousin died at age 7 from Spondalitis (spelling ?).
Oscar too has cried from the pain in his knees, I'm so sorry for all you've been through. Even when this is mild it seems to take it's toll. It's sad to read all the personal stories, but at the same time itfeels good to know that we're not alone and have friends out there that understand. I have to say, I am frustrated, but I won't give up. I truly believe that what Oscar has is JRA. I do not believe it is below diagnostic levels. I think the positive ANA coupled with the Iritis was enough with everything else (symptoms and family history) to get a diagnosis. So I will persist. His case is also mild and Motrin seems to do the trick. He misses lots of school because of the fevers. I am mostly worried about the damage that is possibly ocurring and not being monitored.
Well again, thanks so much, I hope your sleep is restful tonight.
Pam
Pam,Hi Wayney,
Wow, thanks for the reply. Your history sounds alot like Oscar's. I have read somewhere too about the RF usually being neg in children. When Oscar had the Iritis and they dicided to do the blood test, his reg pediatrician assured me that she was well equipped to handle whatever was going on. When the blood test came back she told me there was no way he could have JRA as the RF was negative. So I started researching and found that in children it is almost always negative. I should not have been surprised though, this was the same office that told me his Iritis was just an allergy. Scary, huh? I think Sandy from the first reply was right. We know our children better than anyone and you've got to listen to your instincts. I believe that if a 3 yr old is mimicing you, he's going to mimic the heck out of you (not just now and then). Thanks, I will check out that info you mentioned.
Take care, and have a great Sunday!
Pam
I just had another thought. The ACR has a listing of rheumatologists that you can search by speciality. If your insurance is not an HMO and your are free to tkae Oscar where you want...I'd take him to a rheumy that is specifically a pediatric one. Unless when you meet the rheumy you are going to see they feel comfortable with treating kids. I know some who will and some who just don't feel they need to. I was lucky to be seen at a children's hospital. I'm not sure where you are from but if you are in Indiana, Riley is the best. (Just my opinion!)
Have you or your son ever been tested to see if you carry the HLA-B27 genetic marker? Its a blood test. That can open more possibilities of what might be the problem. There is a group of arthritis that is called the sero-negative spondylarthropies. PA and some other autoimmune disorders are included here. This gene is passed down through the generations. In my family everyone who has had this gene has some kind of autoimmune disorder.
Barb Hi Barb
No, I don't think either one of us has had that test. when I get my rheumatologist apt I will remember to ask about that. It would be interesting to know as my family too has alot going on. Thanks for the well wishes, I'm glad to have stumbled upon you all. We'll keep you posted, Pam Hi all,
Oscar's knees have been bothering him alot lately and last night it was really bad stabbing pains both knees, one felt warm, but no swelling. We kept him home today and called the Dr. His regular Dr was not in and as I did'nt want to wait until next week I accepted an apt with another Dr in this group. Well first of all I must be getting really old because this guy looked like he was about 14 years old. He walked into the room with a terrible attitude and asked Oscar if he had injured his knees. When I started to speak he put his had up and said I have read your sons chart, I know your history and concerns, and I can tell you right now that this is not JRA. He started poking around Oscar's knees and pointing out that he had seen the blood work and that it did not support a finding of JRA (positive ANA, neg RF). I said that is interesting since there are plenty of seronegative people with rheumatoid arthritis and that the ANA would suggest something is going on. Then he said that it was not likely because no other joints were bothering him. I said his neck has been hurting. He said neck pain is never RA related I said yes, it sometimes is...he replied rarely. Wow, I have come up against some abrasive Dr's but this guy was so angry from the getgo. I don't know what Dr's get so upset about when someone feels they might know what's going on with themselves or their child. It's like they want to prove your wrong because they're the one that went to school. I can't even remember everything in the order in which it happened, I'm still just livid. At one point he said I don't think this warrents ordering up a battery of tests and I said I did'nt ask for that, I'd just like to have somebody who'll listen. He said he was listening, but nope he sure was'nt. I told him I had decided to just go out of network and see a Rheumatologist.... this is when his attitude suddenly changed. I told him my husband's patient(my husband is an optician, I did'nt tell him that
Sorry, I feel better now. That was just a bit of what went on, but you get the just of it, I'm sure.
Neasy, I'm so sorry you had such an awful day....you are always such a bright light here, I'm sad to know your down. Better soak in the tub and go to bed early, the sooner this days over the better!Tomorrow's a new day and I hope yours is really great!! Let's compare notes tomorrow, I'm sure it's gotta be better. Thanks for listening, Pam Oh my gosh Pam, I am so sorry to hear about that jerk doctor! So what are your plans now? To take Oscar to the rheumatologist you mentioned???? Keep us updated!!! I know the pain of having a sick child and going through the testing. my 6-year-old has just gone through some cardiac testing and it has been stressful. I have a heart condition as well and hate to think of anything wrong with him. My heart goes out to you my dear. Love, Juliah Hi Juliah, Thanks, yes, what a jerk. We do plan to take him to the Dr I mentioned. It will be very costly, but we know we'll be listened to and well taken care of. I'm sorry that your having to go through testing your son for a heart condition. I can truly relate as my stepdaughter now 18, had open-heart surgery at 10 years old. It was the most stressful time of my life and I know how scary and emotionally draining it is to wonder if something is wrong. She had the surgery to repair a hole in her heart and is just fine, the only problem she has now is the phone seems to be stuck to her ear
I will keep you and your family in my thoughts and prayers are with you and your family. I'll watch for your posts. take care, be strong, love, Pam Just a bump up for Tanya J
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