Meanwhile, I am so fatigued I can hardly move and hobble at night and in the morning like a 95 year old and am in pain everyday. I am trying to work full time on my feet and take care of my kids!!! Today I got the name of a great Rheumatologist, but the cost for an out-of-pocket office consultation is 9.
Has anyone here had a really great experience with a Rheumatologist even though your bloodwork didn't show positive for RA????
Thanks!
KimbraLee
Hi KimbraLee, I want to welcome you to the forum. I don't have any experience with HMO's, as I have a PPO. Can you go to another general practitioner (PCP)? This is the first thing I would suggest, and I would tell the new guy just what has happened. Also, tell him you read that the RA factor can be negative, so you would like a referral to a Rheumatologist. Many here have negative RF, but still have RA.
Also, start keeping a journal to share with new PCP, as well as the RD. I will also suggest that you go to the current PCP and get copies of
all test and records; if they can't find them, then tell them you are going to report them to your HMO. Your HMO will be interested to know that they have been charged for a service not rendered.
I am so sorry you not only have the pain to deal with, but also have to deal with the incompetence of this PCP's office. You shouldn't have to wait weeks for test results... and you should be able to count on your doctor to offer a diagnosis, as well as something for your pain! Please stay in touch with us... this is a great place to ask questions and search for information. Its never too soon to educate yourself and this is just the place to do it!
Any physician, even a GP, who is not aware that there are many sero-negative RA patients needs to go back to medical school.
Give your doctor a chance - he's probably just trying to do the least amount of work [gotta' think profit, you know] to rule in/out a diagnosis. If it was me, I'd be on the phone every few days leaving a message telling him how crappy I feel and that I really feel I need to see a Rheumatologist. Your persistence might inspire him to refer you.
In the case of HMO insurance, it's probably prudent to let the PCP run the tests first, get a diagnosis, and then, if the results are negative, keep hounding him with office visits and calls until you get relief.
I am a sero-negative. And they've tested 3 times in 16 years and am always sero-negative. Before I was diagnosed, and during flare times, I age 100 years and walk like that 95 year-old person you spoke of. I know where you're coming from, as do many people on this website.
But spend the 9 for a rheumatologist? Can you hang in there for another week and pester the PCP for a referral? You want to build a good relationship with a Rheumatologist and your PCP, particularly if your insurance will have the PCP treat you under the guidance of the RD.
Once you get a diagnosis from a Rheumatologist it's most likely going to take a number of subsequent visits to find the right treatment for you. So that will be more outlay of cash.
Unfortunately, the worst part of our disease - at least from my viewpoint - is the time it takes to get a diagnosis and treatment underway. After that, in spite of the flares we each have over the years, nothing seems quite as bad as the early days when a diagnosis had not yet been made.
If you can, try to play within the rules of your HMO.
Good luck.
Thanks much for the feedback. I am just at my whits end right now. On top of being sick myself, one of my teenage daughters is having seizures and I am fighting with an entirely other set of doctors (also who seem to be too busy to care) to try and get her medical help too. They want me to watch her full time for the next two weeks until they can 'work her in' and in the meantime she is hardly eating from having so much anxiety and has had 2 seizures in the past 48 hours. I am ONE person - and my full time job is VERY physical and stressful. I took today off as a personal day - less because of my physical state and more because of my mental one. I am drowning. If I were to express what the theme is in this stage of my life, it would be 'coming up against your own limitations'!
I do also have Thyroid issues - have Hashimotos and have since I was 17. He checked my levels on that right away and wants me to back off my meds. My numbers don't warrant that to me - so I am perplexed what to do about that.
I did change PCP's on line yesterday and will make a follow-up appt. with the new PCP this next week. There is not much to choose from at the facility I go to - it is a small Kaiser branch. Pick Doctor A, B or C. This time I went for a woman ... thinking maybe she will have more compassion for a single mom who is sick with chronically ill children as well.
Wow ... just re-read this ........ sooooooo negative. Can't believe it is me talking.
Thanks for listening.
KimbraLee
My mom used to be part of an HMO and she was pretty much stuck with the doctors they supplied.
I would just call them back and insist something is wrong with your joints and ask if they will refer you to a rheumatologist. Have you done that? Don't stop contacting the doctor because they say your tests are negative. Sometimes you just have to be persistent.
Hope you get some help soon.
Don't give up fighting! Call until you're blue in the face. Contact the HMO if need be. I'm sorry you have to deal with these insurance issues on top of what you're going through physically. It is unfortunate but true that the insurance industry just wants to see how hard you are willing to fight.
Don't worry about negative posts, we all have horrible days around here. Hugs to you and good luck fighting the good fight. I hope you get appropriate care ASAP.
KimbraLee, welcome to the site and so sorry you need to be here. Like Waddie suggested, keep a journal and write down everything, especially things like fevers where you have a number to back it up, but also functional issues like dropping things or falling or morning stiffness (and how long it lasts). If you have any swelling anywhere or other visible issues, take photos. Many of us have "wished for a flare" when seeing the doctor, but this is the next best thing you can do. My doctor was shocked at my photo of my swollen ankles from in-between visits.
I know this is a difficult time, especially dealing with your daughter's medical issues as well, but hang in there (come here to vent whenever you'd like) and be persistent. Like the others have said, deal with this within the HMO if at all possible. If you have RA, or even another similar disease, it will be a long road ahead, and potentially an expensive one without insurance to back you up.
BTW, I am sero-negative for the Rheumatoid factor. I was already seeing a rheumatologist for Fibromyalgia when my RA symptoms began appearing. It still took about 6 months of regular visits and testing for my doctor to confirm I had RA, and I consider him a pretty good doctor.
I wish you and your daughter the best of luck. Please keep us posted.
Kimbralee,
You wrote: "This PCP actually 'warned' me at the end of our last visit to begin tesing for RA that if my blood work doesn't come back abnormal I will need to consider the idea that I might just be 'depressed'." This PCP is a jerk. So I'm glad you've taken action to get another PCP.
I don't know how Kaiser works, other than you don't really have many choices, but surely there is a patient advocacy board? Maybe not. In any case, I am thoroughly beside myself at the audacity and sheer stupidity of the first PCP.
If he had a lick of sense he would know that being a mom and having a sick kid and being sick herself doesn't allow much time for being depressed. [OK, I know it happens, but any mom who would take the trouble to write all this on this website and do battle with her kid's doctors as well as her own is most likely not depressed and that PCP should have realized that.]
I know it's hard - especially when you're feeling lousy - but don't give up.
Maybe we should start a thread and have all seronegatives like myself testify to it and then Kimbralee can run off hard copies and send them to that moron at Kaiser.
Kimbralee, you just keep your head up. We're here for support.
In my area, your pcp has to have the tests done on you and the results are sent to a rheumatologist. Then they look at the results and decide if they will even take you as a patient. You almost have to go to whoever accepts you because there are so few in the area. I would discuss with my pcp and be firm with them that you obviously have an issue and it needs to be resolved. You require their referral. I used to go to a pcp who hated to give referrals--I guess he was paid more if he didn't give referrals and then the insurance company changed their procedure and I no longer needed him to give me a referral. At the time the RA was kicking in and I had no idea what I had but wanted to see a foot doctor. I did find out the hard way--you need to be firm with your requests. Not quit "I am going to sue your pants off unless you give me a referral" but close!Kimbralee.... I, too, am sero-negative but had a high ANA..... Do not give up the fight. Demand a referral or contact your HMO. Having this type of insurance does not preclude you from getting a proper diagnosis.
Read these articles..... print them.... and take them to your PCP. He needs to know that he is keeping you from getting proper care in the early part of your disease when it is MOST important.
http://www.aafp.org/afp/2005/0915/p1037.html
http://www.everydayhealth.com/rheumatoid-arthritis-specialist/treatment-aggressive.aspx
Best to you,
Babs
oh... and depression does NOT inflame your joints....
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