A medical billing vent and caution

[Nancy]

Blood tests showed I did not have rheumotoid arthritis. I should have just waited for those results and not had the xrays. Live and learn. I always thought I was being very responsible and involved in my medical history but this has taught me to speak up before I agree with any tests and go with my gut. I knew the blood test was definitive so I don't know why I agreed to the xrays except that I was in so much pain in my whole body and was concerned. My fingers show obvious osteoarthritis, it doesn't take a md degree to recognize that. And one xray of one hand would have verified that.

I had to fight my gp to give me celebrex but it didn't help. I now have a generic form of celebrex but honestly it doesn't help much either. I'm back taking advil when the pain is too bad. The constant all over pain is gone. I have no idea why I have such a total body flame up that lasted two months but now it is back to certain areas and I can live with that.

 

[TerryJ2]

Nancy, I have several friends who had what you have, and they gave up gluten. Within just a cpl wks they were almost completely better. It may not be gluten; it could be something else. But your body doesn't like it, whatever "it" is. Just a thought.

 

[Nancy]

You are right Terry, I felt my body was rebelling against something. I can try gluten but at my age I just don't know if that's what it is. I almost think it was some kind of inflamation that invaded my body. I am lactose intollerant but am very careful what I eat.

 

[ThreeShadows]

Did any of your joints swell up?

 

[Nancy]

Not really. Just nodules on fingers that are typical of osteoarthritis. But the joints hurt to the touch. Like the little bone at the base of my wrist on pinky side...awful pain on both hands. Certain points on my feet very painful to touch.

 

[ThreeShadows]

Do the nodules come and go?

 

[Nancy]

Never go away, sometimes they are more pronounced but recently they have gotten bigger and I don't think they will shrink. They have progressively gotten more pronounced. Sometimes they hurt and sometimes they don't.

 

[ThreeShadows]

Has anyone considered Lyme disease? You don't necessarily get a rash.

 

[Nancy]

Well that's why I asked for blood tests. Wouldn't that show up? I can't remember all he had done but I know he checked a lot mire than the ra factor. I think some tests were to check for inflammation and all tests were normal

 

[ThreeShadows]

Look for this on your results: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004022/

 

[ThreeShadows]

Never mind, I missed this statement: A positive ELISA may also occur with certain diseases, such as rheumatoid arthritis.

 

[susiestar]

Nancy, I do have bone problems. I have tried every version of vit D that my docs can find - OTC and rx pills, a supplement that was some omega oil with vit D in it, specially compounded shots and a cream. Going out into the sun or using a sun lamp has also been horrible and not effective. I vomit with all of these things, and with the rx amts of vit d that lasts for days. It is horrible, but there just isn't anything the docs can figure out. They have told me that I cannot take the bone building medications because the calcium in my blood is not high enough and with-o vit D they won't work anyway. They would most likely cause excruciating pain. One patient my endocrinologist tried the bone building medications had a severe reaction and had to be in the hospital on iv pain medications for over a week because it was so bad. Even with iv medications she was crying and screaming because the pain, so for much of the time they kept her asleep, which no doctor wants to do.

I am sorry you have this problem, and I pray it never gets to this point for you. I am horrified that it took doctors decades to tell us about this, and that I didn't look at lab results myself way back when I first starting having health issues when I was a teen. My kids won't have that happen because we get copies of every test and keep it in a file. I also look to see if anything is outside the normal limit because docs often miss things. I cannot tell you how many times I have asked a doctor what this or that result that is out of the range means - and often that is a key piece of info that helps them treat my child effectively. And since you can OFTEN find trends in the results, we have found some important things happening even though the results were never out of the normal range. I see the blood tests as a snapshot. They tell where things are at a set point in time. By making a graph or chart, you can compare the results much like having a photo collage of your child with pics at different ages. You get more info about what they look like now from the collage, and you get more medical info by watching what the levels do instead of just what level they are.

 

[Nancy]

3S I was actaully worried about soemthing systemic when I went to the dr. Because of the fact that it came on all at once and affected joints in many parts of my body and also some muscles, I was afraid something serious was going on. Not only did my hands and wrists hurt but my forearm, the muscles in my forearm very very sore. My body hurt...all I could think of to tell the dr was that I hurt all over and I felt like I had no strength. Even my ankles hurt so that walking was nearly impossible. And everything hurt even when just sitting or lying down, not just the joint but all around it, certain bones, etc. I know it's hard to describe and even now I don't know what it meant but I did feel like there was some type of inflamation attacking my body. I didn't have any of the other symptoms of lyme's so I didn't think that was it, but it was something that attacked me.

 

[toughlovin]

Nancy,

I am glad you are feeling better to some extent and I agree with all you said about the cost....There are other forms of inflammatory arthritis that are not rheumatoid arthritis. I have a form called unspecified spondlyarthropothy....now I have had a variety of weird inflammations (particularly in my eyes) and then weird arthritis in my toes etc. Luckily for me my primary care doctor is also a rhemotolgoist and so he eventually diagnosed me and after looking into it makes perfect sense.... anyway it is a disease that is pretty serious in men (affects the spine in particular) but often presents less severely in women. People who have it often have a gene marker called HLA-B27 (or something like that) which can be tested for by a blood test. One of the things that is pretty interesting is that there are some theories that starchy foods can cause flare ups... not just gluten but all starchy foods. Anyway of course we cant diagnose anything on this website but it is one of those weird forms of arthritis that no tmany people know about.

TL

 

[Nancy]

That's interesting TL. Do you take any medications that help?

 

[ThreeShadows]

You have recently had foot surgery, did the pain start before or after?

 

[Nancy]

Before. I was in Las Vegas with easy child for a conference about two weeks prior to the surgery and all I could do was lay at the pool. Actually I felt better in the pool, except that those bones on my wrist hurt so darn bad to the touch and were so weak I could hardly pick up a water bottle.

 

[svengandhi]

My company is switching next year to a plan with an in network family deductible of 2,500 and an out of network deductible of $10K. They have told us the intention is to stop us from going out of network. Fortunately, the insurer has a large network and I was even able to find doctors and PT upstate for daughter so I could save a bit by taking her off the college medical plan. I very rarely go out of network. The only time was for a PT for my daughter and his office took what the carrier paid. I just have to stop husband from thinking he can go to the er for every little thing just because he has a heart condition... If you're not admitted, there a $150 charge not subject to deductible.

 

[toughlovin]

Yes I do take some medications....when it first started I had this weird arthritis in my feet so that it was pretty painful to walk....after I was diagnosed by doctor started me on two drugs that are known to help this disease (metheltrexate and Sulfazanine). After a few weeks my feet got better so that now I can go on regular walks... I still have to be careful but basically my toes are no longer swollen and I am not having joint pain. I have had some flare up with my eyes now and then. I am not just taking a small dose of metheltrexate but am not taking the sulfazanine any more. I cant take anti inflammatories because they upset my stomach really bad. I do know I feel worse when I eat a lot of starch.... although I have not been able to go completely no starch, but cutting down on bread in particular seems to help.

TL

 

[ThreeShadows]

Well, that's interesting, you were in a different geography when it happened. I wonder if other hotel guests have the same symptoms? Remember Legionnaire's Disease in Philly?