Sorry, I have no answers for you, just wanted to welcome you. Welcome to AI. With that positive Rheumatoid Factor I'd say it's RA and your doctor tried to refer you because they rarely know how to treat it. If you do decide to stick with only your GP definately do your research. Sometimes you can meet with an RD to confirm the dx and have your GP work together for treatment. You might be able to only see your RD a couple times a year if they agree.
I think it would be best if you at least meet with an RD and see what they can do for you that might be different than your typical family physician.
Good Luck.
Also, I may be wrong but....
I'm wondering if a PCP/GP would have the authroity to treat someone with confirmed RA? I'm not sure what meds they can and cannot DX. They may be out of their league.
And even if they can, I wonder what restrictions the insurance company might hold on it?
Just throwing it out there.
Lovie and arriscolwell,
Very good points, I think I am in a bit of denial. Since researching and reading how severe RA is/can be and my symptoms are really bothersome to me but not swollen and red which I guess I have in my head as the key to really being RA. (once again denial). I have been reading how aggressive treatment is best. I think in my gut I feel it is RA but am also worried about going to another doctor and getting the run around. Maybe they won't listen to me, maybe they I don't know. I feel totally mental all the sudden and just so very tired. I think the denial comes in too because I have read what people say about sleep and the importance of limiting yourself to stay healthy. I have 9 kids, (15, 14, 13, 12, 10, 8, 6, 5, and 4). One is severally learning disabled, one is autistic, four are teenagers. My 4 year old is the autistic one who still does not give me a good night sleep. I am lucky most nights if I am in bed by 10 (usually 11) and then the morning starts at 5am. I am scared of being in more pain than I am now. I am scared of joints swelling like I have seen in pictures.
You made some great points about a PCP being able to prescribe meds and stuff. I am not sure either. Guess I should make an appointment with a RD.
Thank you so much for your straight forward remarks, they helped a lot!
joonie, thanks for the welcome.
I too am hypothyroid. When I first started my joint pains the light bulb went off in my head. Once you have an autoimmune disease you are predisposed to other autoimmune diseases. That was enough for me to investigate further.
I never really had the redness, or heat in joints, but I did have swelling. Rheumetologists seem to be sticklers about the morning stiffness, (which I did have), but you will soon learn from AI that we all vary.
No matter what, you know something isn't right. A rheumatologist can order further blood and urine tests to check for RA or another possibility. Many of these tests a GP won't be familiar with.
Good luck.
No problem. :) Denial is a completely normal space to be in right now.
Getting or thinking that you're getting a chronic illness causes you to grieve. And I'm hoping (assuming) you've heard of the 7 stages of loss? You go through the same stages, as they apply to learning that your life is about to change.
But it's not always for the worse. The sooner you deal with this, the less time you'll probably be spending away from your lovely children, if any!
I have to ask - are they his hers and ours? Or did you birth ALL nine?????
Katie makes a really good point about the meds. Even if you could get a GP to prescribe things like Humira and Enbrel (Which they likely never would) it might be difficult to get insurance companies to approve them. They look for any reason in the world to give folks the run around because they are so expensive. ALSO; often even if a GP dx RA they'll rarely treat it aggressively. They'll piddle around with things like Celebrex just to see how things go. Most RD's won't do that especially with a positive RF.
Just a few things to consider. You'll definately want the earliest and best treatment plan possible with the hectic life you live. RA is totally livable. Don't let all the pictures and horror stories you read scare you. Many of us live a full life and continue to work full time jobs for many years after DX. Don't let the fears hold you back from seeking treatment early. It will make a difference.
Bless your heart.....no wonder your tired! 9 kids! WOW.
I have 7 pregnancies in 5 years with 5 births and two miscarriages. On birth control. I go into labor at 24 weeks and am put on bed rest. Made it to 34 weeks with the first two, they still spent a month in NICU, then I discovered red raspberry tea, said to be a strengthener for the uterus and drank it like it was going out of style. I then had my first full term no problems. Didn't take it with the fourth until the end (duh) and he was failure the thrive his first year but born 37 week. Took it with the fifth and they had to induce. Interesting huh? But after 7 pregs in 5 years with no way to stop them it seemed we decided we didn't want to loose me or a baby and took pertinent measures. We then did foster care for a couple of years and then got our three girls and then your youngest son was born at the end of the ordeal. They are all related. So they are all ours but we had to get them here by a little different (not necessarily easier) means.
Wow.
Do they give medals for that many pregnancies and births???? I'm gonna find you one....just you wait........
:-)
I feel like Lotokids and myself are in similar situations... my bloodwork is slightly different though...
This is mine:
Sed Rate by modified westergreen: 4
Anachoice screen w/refl to titer, ifa anachoice screen: positive
Anachoice antibodies, titer and pattern
ANA pattern: negative
Antinuclear antibodies <1:40 titer
(the above results may suggest the possibility of autoimmune antibodies. testing for ena antibodies (sm, sm/rnp, ssa, ssb, scl-70, jo-1) and ds-dna antibody should be considered if clinically indicated.
Rheumatoid Factor: 37 H reference range <14 IU/ml
My feet, hands, elbows ache all the time. I never feel relief and although there is no exagerated pain in the mornings, sometimes my baby fingers (which are the sorest of my joints) get itchy.
I am seriously losing it... I have a 7 month old and a 3 year old. I started crying the other morning in bed - thinking that if I do have RA that i might not be able to be a grandma (as I'm an old mom at 38) and I might not be there for my kids when they are older. I am terrified.
I am terrified.Hey, and welcome to you both. Don't be terrified or worried, it will just make you feel worse. RA thrives on stress. Alot of the stuff you pull up when researching on the web is the worse case scenerio and alot of people stiff work and function everyday. Don't hesitate to much to get started. The sooner you start on meds the sooner you can stop the progression of ra. There are some women on this site raising their babies/children by themselves. Some work full time. It affects everyone differently. Both of your ra factors aren't that high so maybe your disease won't be so severe. Good luck and keep a pad of paper to write down symptoms and questions for your dr and of course, come here and lots of people are in the same boat and have been for awhile and are eager to answer any questions.
take care and God Bless
_popupControl();^ I agree with cinDee, don't stress. There are plenty of self-limiting inflammatory viruses, diseases, and "moments" that your body can have which run a short course. Even if it is RA, you may be one of the really lucky folks who go into remission within 6 months, or go into a drug-induced remission within the first 2 years. Drs are usually hesitant to diagnose RA because often, it just disappears, or changes into something else, so if you don't get a diagnosis straight-up, don't stress.
Mum of nine - my goodness - what a handful! I hope your oldest kids can help you with the younger ones. From your symptoms, it is pretty clear that you have an inflammatory response to something, but because your symptoms have only been there for three weeks, there is not need to get ahead of yourself just yet. Acute symptoms can come on and go away soon enough. I would go back to your Dr and 6 weeks and if you are still feeling yuck, ask for a rheumatologist referral, and ask to go on Prednisone. If you have a good reaction to the Prednisone, it is a good indicator that you have an inflammatory condition, and possibly inflam. arthritis. Good luck!
I am going to schedule a Rheumatologist appointment now since they can take so long to get into and in the mean time take the celebrex the doc proscribed and see where we go. So far the Naproxen and Celebrex and 800 mg IBproffin are not helping the pain.
Hi Lotokids,
nothing helps my pain either.
for what it's worth, a friend was in similar agony after having a few kids, went to see a RD, and he took one look at her and her kids, and asked her when the last time she had some GOOD sleep was. He told her to get some rest at any cost. Sure enough, with a few months of sleep she was better. She was convinced beyond a doubt that she had RA. I am hoping that mine will go away once i get some rest too.... my 7 month old is not a good sleeper. Good luck with everything. I'm worried about both of us. Our kids need us to be healthy.Hello Lotokids and cdndream...welcome to both of you. I think you both share in the common overwhelmed and disillusioned phase in this dx. Ask a lot of questions of the board and of the RD, but I agree with Katie....the first thing you have to do is take action. This disease loves to disfigure very quickly, so the quicker you can get in and see an RD the better. Think in terms of today right now...tomorrow will always take care of itself. Please...don't get overwhelmed by thinking in thoughts of years. Just take one day at a time or even one minute at a time.
Lotokids...sleep is going to be your best friend through this. You will need it to fight the fatigue and the pain. Is there anyone else that can help with the little autistic guy? What is his routine like when he wakes? Is it b/c he is wet? You may need to rotate the kids or hubby through the night. Trust me...if I can get sleep...even though I am in pain...my mind handles it a lot better.
Oh yeah, I dont' know why I didn't mention this.....
On the off chance that you need assistance, or need to know where to go for assistance let me know. My mom's worked with special needs kids for 18 years and has *tons* o' info tucked away in her crainum. I can always rack her brain for places/services/people/companies etc etc etc etc.
You sound pretty with it though, so I bet you know alot of stuff already :)
Well I am sure the stress side of things is a big one right now since it is pretty high. Our autistic boy got into an Autism School for next year and they gave him 10K in grants and scholarships but we still have to come up with 18K. A mere ,500 a month. Then we are dealing with some grandparents and that is pretty stressful and my best friend from high school died (36 years old) from breast cancer last month leaving three children and a hubby. Then there are of course all the normal things like our youngest just having surgery this Monday. He went to school today and I just took a 2.5 hour nap. Don't want to wake up. I am a Girl Scout leader and 8,000 boxes of cookies just got dropped off at my house on Tuesday and I have to get those delivered and sold this month.
I did call and am working on getting into a Rheumy, they said the beg of April is where they are booking but will not book it until my PCP gets them some info and he is not in the office until tomorrow.
You guys have been fabulous here, I certainly feel the hope from everyone and everything that I read that once you get on a good treatment regiment that you can live a pretty normal life. I am excited about that and am thankful for all the advances in medicines.
Thanks for all the info. Does your mom have any fund raising idea's, or additional resources for money for special schools, arriscolwell?
I'm sure she does, I'll give her a call tonight and let you know what she says. :) If not, she'll at least know the right direction to look.
And I can be pretty handy with google.....so I'll do some hunting too.
Ok, so I have a question.
I will wake up and be achy and get going and feel OK but then by 3-4pm am really achy and hurting. If I do a lot one day it seems like the next I am toast. Is this typical?
Thats how I am. Over-do it one day, and pay for it the next! But I'm not medicated either. So that's probably part of my problem.
Did you see the Doc yet?? And did you see the other post I made to you?
Waiting to get into a Rheumatologist.
Did your mom have any suggestions?
So are you working with a Rheumatologist Katie? If you have been dealing with this since childhood how have you survived without other medication?
I am working with someone. I was off meds and away from docs for *years* after I moved out. My own fault!!! We're doing some massive documenting since the military wants to be assholes (excuse me) about giving me anything but a really POOR copy of my records.
Grew up as an army brat?
So why are you fighting the military?
I was an AF brat. Whee! All you can get from the military is a COPY of your records. They are GOVERNMENT PROPERTY. At least, that's what they stamp on the cover and then try to tell you.
Last I checked, it was MY BODY. But whatever. The copies they gave me are CRAP. You can read MAYBE 40% of them. And of course, hardly any of that has to do with the JRA. Of course, right? LoL
Did you see my other thread to you????
Here's the link to the other thread with info for you:
http://arthritisinsight.com/forum/forum_posts.asp?TID=14435
Ok, Ok, I see it now. gotcha, thanks will check these sites out. I am in Utah by the way.
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