New Here, My Story | Arthritis Information

I have yet to find a dr. who will diagnose me, but this what I have been going through:

Late 2003 I started having restless sleep and knee and lower back pain. I was 7-8 month pregnant and attributed all of this to the fact that I was severly swollen from water weight, something that did not happen with my first pregnancy in 2000. After delivering my daughter in January of 2004, it was discovered that I had fluid build up in my lungs and around my heart. I was on O2 and diuretics for 3 days afterward. The cardiologist said that my heart function was decreased by about 10%. He had no explanation for why this happend with my second pregnancy and not my first. By 2005 the knee pain was constant and at times if felt like someone was tightening the joints in my hip causing numbing pain to go down both legs. I was suffering from fatigue and restless sleep. In 2006 my family doc referred to me to a rheumatologist. She ruled out RA by testing for RF which was negative and ruled out Lupus because ANA was negative as well. ( I now know that only about 65% of RA patients will test positive for RF) She said it was just unexplained pain and put me on plaqunil. After two months on the plaquinil there was no improvement and my weight had dropped to 103 so she decided to take me off. I told her during this time that my symptoms were progressing and that I was know having severe joint pain in the finger joints of both hands and that my hands swelled at night. She again siad that it was unexplained pain and put me on methadone for pain. This was not really a good solution since I have two small children at home, I can't really be on narcotics all the time. So I asked my family doc for another referral to get a second opinion. This doc ran the same blood test and did actually take some x'rays of my lower back, which wasn't really my main complaint. I went back to see him two weeks later and he basically said there was nothing wrong with me and that he hoped the pain went away as mysteriously as it appeared. I left the office in tears. That was November of 2006. SInce then I have been mainly under the care of my family doc. I am on elavil to help me sleep. But in the past year, the pain has worsened. My wrist and fingers swell and night and often feel like cirrculation is being cut off. My feel swell and the joints in my toes hurt. I have days where getting out of bed and getting dressed feel like major accomplishments. I am stiff in the mornings and usually lay in bed about an hour after I actually wake up. My doctor has offered to send me to yet another rheumatologist who is about an hour away. I know I really need to go since things are just going down hill, but I'm not sure I can handle another doctor acting like I'm just making this up! The worst part about this is my husband is military so we have insurance that covers 100% of just about anything, but I can't find a doctor who will look past the blood tests! I would appreciate any advice that you might have! THanks for letting me vent my story!

Welcome to the board carolinagirl. Do you know anyone in your area who is seeing a good rheumy and could give you a name? Maybe someone on the board here lives in your area and can give you a name. This is really too bad. Did they xray your hands and feet? Have they done any other blood work beside ANA and RF? How is your CRP and ESR? It sounds to me like they are stringing you along and ignoring you while you are going down hill. Prescribing methadone was a bone head move as far as I'm concerned. That is a med that is given when nothing else works. Please find someone at once. I hope someone from the board can give you a name of a good doc in California that can help you. Don't waste any more of your life waiting for an answer. The other thing I want to add is you will learn on here that you really have to advocate for yourself with this disease. You have to squeak loudly at time and insist on answers.Welcome! I am newly diagnosed myself and probably can't shed to much light for you. But I went through about a year of the same thing. On so many mornings it was all I could do to get up out of the bed, always tired and fatigued. Every joint hurting and swollen and on and on. I couldn't seem to get any one to listen to me either. Till finally my dx came. Don't give up. Be persistent and insist on all the testing you think you need.
It sounds like RA from some of the symptoms you are experiencing but I can't say that you do have RA as I am certianly not an expert. What I do know is that some people have RA and it doesn't show in the blood. They are seronegative I believe it's called.
There are others with more experience on this forum who I am sure will chime in share their experience and wisdom. Good luck and keep insisting on getting the tests until dr. can give you an answer.
There have been no x-rays of my hands or feet. Back in 2006 there was a complete blood workup done but sedrate and everything was well within normal limits. When I told my family doc about the rheumy putting me on methadone, he about had a heart attack...everyone I have told agrees that I did the right thing in leaving that rheumy. I have a friend who is doing his clinicals for med school and he said that everything I describe is classic RA symptoms. I am calling my family doc today to get him to issue the referral to the last remaining rheumy within driving distance. It will probably take a couple weeks to get it all approved through the insurance, but I know I've reached the point where once I see the doc, I'm not going to settle until I believe they are dedicated to really helping me! Thanks for your support!Welcome to AI. Many people have simular stories. It's so hard for me to understand sometimes how one doctor will quickly dx'ed RA or an inflammatory arthritis without positive blood work and other's quickly rule it out. How many doctors put patience on Plaquinel for undefined pain? That sounds weird to me. It's not like prescribing IUB. A DMARD that plaquinel is used to modify a disease not kill undefined pain.

Have you ever been given predisone? Maybe one of your doctors could put you on a short course of predisone and see what sort of reaction you get. If you feel better within 24 to 48 hours you can pretty much bet you have some sort of inflammatory arthritis. Encourage your doctor to just try it.

RA is unlikely to show up in the lower back especailly early on. That could be caused by something else. I've had horrible pain problems since my early twenties but it wasn't until my middle thirties that the problems were actually RA/Arthritis related. Disk problems, muscle....even nerve problems can effect your back. X-Rays aren't the best way to find back problems either. An MRI would show much more than xrays; but their expensive and sometimes doctors aren't too quick to order them.

I'm sorry you're having such a hard time. It's nice to have you here at AI; although I hope you find out your problems are caused by something totally unrelated to what the majority of us here have. Here's to hoping!!

Welcome.

On October 1, 2007 my bloodwork showed no inflammtion. By December, 2007, I had a huge flare, inflammation markers were present, and my doctor immediately dx inflammatory arthritis. Things can change in months! Good luck to you.

Welcome,

I am so sorry that you are going through this also. My rd put me on plaq and said I'll see you in 6 months, I know that it takes a while to start working but after 2 months and syptoms of pain and stiffness in feet and ankles worse and spreading to knees, wrists and fingers I made an appt to see him. He had the f?!?!?ing nerve to ask me why I was back before 6 months. He said that unfortunately it sucks to wait and said I'll get you a shot of toradol, which doesn't do crap by the way and left room. Needless to say I left in tears. My insurance only covers one clinic and so I called to try to make an appt with a rd in any town in my state, the said no since you are already seeing a doc in our clinic we will not switch you, I told my pcp this and he said he would call and refer me for a second opinion and that would work. Well my pcp called a few hours later and said that in his 28 years of practice he has never had this happen but they refused him also, he was pissed to say the least. So I don't know what to do myself except pay out of pocket which we can't afford. I am a stay at home mom of two boys ages 4 and 2 and moneys a little tight right now.

Oh, I forgot to mention that all my tests were normal also except rf of 160 which isn't high I do not believe.

Also insist on a CCP test when you have your new labs done. It can detect RA at its earliest stages. Good-luck.

I too hope that somehow all my symptoms can be attributed to something else. But as a childhood cancer survivor (hodgkins disease) I have a pretty good sense of when something is really wrong. Having people to talk to about this renewed my determination and I just got off the phone with the doctors office and should have the referral for the new rheumy in about a week. Besides the pain in my finger joints, the worst right now is that my knee caps feel like there are rubber bands tightening around them..all the time. I am starting a journal of what I feel like day to day, including taking my temp. daily since that is something I have not monitored before. My kids are 7 and 4 and it is hard to explain to them why during the summer when they are home all day, I can barely pull myself out of bed before 8:30. My first rheumy did do a trial run of prednisone before she put me on plaq. I was in the middle of a really bad flare up at the time (which would be considered mild compared to how I feel now!) and there was some improvement, but she wouldn't keep me on it long term. When I go see the new rheumy, I can' decide if I want to let him know he is the 3rd one I have been to, or approach it like a first visit so he will not be influenced by what the past doctors have done/said!

Hello, carolinagirl! I see that you're in California, so am I. But since you're with military insurance I'm assuming you can't be seen by a Kaiser doctor. Is that true? Because I have Kaiser and I really think I have an outstanding rheumatologist. His name is Dr. Lehmer and he is in Anaheim. I really feel for you because I remember 3 years ago when my primary care doc was trying to treat me for carpal tunnel syndrome when I actually had RA. I agree that you need to be your own advocate and I had to pressure to get a referral to a rheumatologist but things have worked out well. I definitely still have symptoms but there now in the "manageable" category and, for the most part, I'm doing okay with my RA. Keep pushing and try to get the right diagnosis---I hate it when a doctor looks at you like you're crazy because you don't fit neatly into one of their diagnoses. You know your own body and when something is definitely wrong. Good luck in your search for a doctor who will listen and get the proper diagnosis for you. Keep us posted on how it's going. I am not sure about my insurance paying for keiser or not. I do know that there are a couple of rheumys on the list in the LA/orange county area and if the one I am going to see closer to me doesn't work out, I may end up driving the three hours to see one of them as I have heard that health care in that area is amazing...though that wouldn't be very practicle for routine follow ups! ( I am near Santa Maria if you know where that is) The good thing is that my pcm here on base has no problems referring me to off base specialist, if I could only find a specialist that seemed to actually care! It's not something I talk about with a lot of people because I still have to get on with my life and I don't want people feeling like they can't ask me for anything. I've talked to my husband about it, and I know that he believes me, but I don't think even he really understands the extent of how I feel!If you can get by with it....I might leave out the part about the other RD's. Let him form an opinion without feeling like he's underminding them. You might be better off.

The fact that you responded well to the predisone is a pretty good indicator that you have some sort of inlammatory arthritis. THere are about 100 different kinds of arthritis. Some way worse than other's. Long term predisone isn't a good idea that's for sure. It can bring a whole new group of problems as well; none of which you want either.

I don't tell that many people about my RA myself. Of course my family and closest friends and a few co-workers know. It gets hard to hide at times with all the doctors appointments and sometimes symptoms. It's just suited me best to do things this way as long as I can. It likely won't be possible forever; but for now I've managed.

Welcome Carolina and I'm sorry to hear about your pain. I am new to the board also but certainly not to RA. I lived in California also and if you are by the water I would imagine at night your symptons might get worst. Try sleeping with socks and gloves on to keep the damp air from those areas. I hope you are able to find a good RA soon. I got an idea! If you have a digital camera, take pictures of your hands when they are swollen. I would make sure the date is on the picture. Then take another picture of your hands the next day to show that the swelling went down.

That is all I got.

OH and welcome to the board! Hope you get some answers soon.

Hi and welcome to the board. Sorry to hear about your pain and swelling. You're getting on the right track. Keeping track each day and pix are a good idea. Also make a list of questions you have and write them down so when you get to see dr you don't forget. I wish you luck and hang in there.

take care

Hi and Welcome -

With a history of cancer, you might consider Antibiotic Therapy. Check out www.roadback.org and maybe get the book The New Arthritis Breakthrough by Henry Scammell available on Amazon.

If you decide to go that route, one of the top AP docs in the country is in Riverside just outside of LA about 2 - 3 hours from you.

If you have any questions, I'm here.

Pip

carolina..

I am sero-negative RA.

I was first told by an RD that I had a "virus" and I'd "be fine"

I saw a second RD who is a specialist in RA... and though he knew I had it.. I had no medical markers to complete the DX. He put me on DayPro 1200mg/day.. same time.. every day... I felt some relief.

Then I flared!! I called him and he saw me immediately.. he drew fluid from my knee and looked at it under a scope... and said " We HAVE a diagnosis!!" he knew.. but needed proof to get me the aggressive meds.

It's hard to be DX'd w/ RA when your tests say otherwise... but we have RA just the same.

I am working with 20mg Methotrexate and 50mg enbrel each week and am feeling much better.

do not give up!! keep going til you find a dr that is listening... even if he can't say, you have RA immediately... you can tell if he is sympathetic and understands...and when you flare (and sadly, you will) get to see him that DAY. He needs to see you in flare.

I wish you the best.. I hope for a DX whether or not it's not RA, so you can be helped..