There is something I don't understand about RA, well there are a whole lot of things I don't understand, but this one is on my mind. From everything I've read it is better to catch and stop the progress of the disease as quickly as possible, but the doctors won't do anything until you've had symptoms for a really long time. I've been having pain for 6 weeks, and the doctor said that he thinks it's inflammatory arthritis. But, he said wait and see and come back in 6 more weeks, and he doubts he'll put me on medication even then. So that's 12 weeks or more of an untreated and active disease. I know that I might not have RA, but the whole wait and see attitude while something is raging through my body possibly destroying my joints, just doesn't sit well with me. Can anyone make sense of this for me?
That doesn't sound right. If you have RA and aren't on any meds yet, it should show up in your bloodwork and then the meds should start. Maybe time for a second opinion?Hi Special, gosh it sounds like you could use some intervention from your GP? Can you get any help there or is this the circle thing? This is a mysterious disease sometimes and you are caught up in that never never land.
I'd keep a journal everyday, what meds, what pain and where , so you can call the RD and give him information that solves this puzzle. He's waiting for the test results? (He's looking forward to the Thanksgiving Holiday??????)So scary, but i don't think 6 weeks will cause joint damage. good luck with this, Lynda
I guess that he's waiting for the test results. He said statistically speaking he thinks its some type of inflammatory arthritis. He said he wants to wait and see what happens in six weeks and even then he's unlikely to put me on anything. He said something about diagnosing RA being a big deal and it will be a pre-existing condition. But he never mentioned anything about getting test results and going from there. He did inform me that if the blood tests come back normal they won't be calling me to let me know because they don't do that.Aaargh!
Dump him! I know, I know I sound like a broken record but...
Arrrhg!
Pip
Oh, don't worry Pip, I will. I am contemplating a scathing letter or phone call right now. Do Dr's have bosses? I imagine someone can yell at him, right? Seriously, I would have accepted a "I'm sorry you're in pain, but this process takes time, we'll do our best to help you figure things out." So simple.I'm with Pip on this one special. You don't want to sit and wait while yourSpecial, that doesn't sound right to me either. When I first saw my RD, he told me he was sure I had RA but couldn't make an official diagnosis at the time. He initially diagnosed as Migratory Arthritis but treated me as if the official diagnosis was RA and rx'd Plaquenil and Relafen.
I don't think I'd like any doctor telling me I had to put up with the pain for 12 weeks. That's just not right!
I agree. If your blood work doesn't scream RA is he still going to ignore your symptoms? My blood work was undefinitive and still the RD put me on RA drugs to keep what was happening from getting any worse. I have some issues with my RD and you may find that you won't find one who pleases you completely either, but at least he erred on the side of caution and treated me aggressively in order to nip it in the bud and I'm doing better overall. Even vague symptoms can still be a disease that requires RA type drugs. I think you need a more aggressive doctor.I agree with all!!! Sounds like you need to get another Reumy and opinion. I went in 2 weeks ago for the first time and was examined and she said I had Fibro and almost positive I have RA. Took a lot of blood and even though my RA factor was normal other tests were high. She diagnosed me that day with RA and put me on Pred because she knew I was in so much pain. I am now off Pred waiting for TB test and will be going on Embrel or Humira next week. I am very newly diagnosed and my doctor is treating the RA right away and you need to find a RD that cares that you are in so much pain and find relief. My Reumy says a lot of people have negative blood work but have RA so if your doctor sees negative blood he is just not going to call you at all? Sounds like everyone is right, find a new doctor.
I wish you the best and this forum has been great for me, a lot of wonderful people you can talk to that are going through the same thing
Hugs, Angie
Hi Special, This doesn't sound right to me. You should have blood tests that test for the sed rate, and you should be on mexidication. I agree with the others that you should get a second opinion.Dotti51 Even though I regret I did it, I was immediately put on five months of Predisone for pain. No one should suffer, that's suppose to be a creed or something that medical doctors are trained to follow, but dump this loser fast.
Yeah, I will be done with him soon. He had a small amount of redemption when his assistant called me back today. They prescribed me some darvocet, which I wish I didn't need, but should help me sleep. I called my insurance today and they said go ahead and go to another doctor so that's cool. I am waiting right now for my blood test results to come back. I will take them to a new rheumatologist when they're done. I am headed for an orthopedist soon, because I still believe there's a chance it's mechanical, and I at least want to know that someone looked at that possibility seriously. I am a little gun shy on how to pick another RD. I don't want to find another one who's just as bad, and I know no one who has RA around here. But I will keep trying until I find a good one!
< =text/>_popupControl(); Oy, yet another doctor treating lab work and not the patient!!! Get another doc and another opinion as fast as you can please!! You should be on something ASAP!!!
You have a great attitude with perservering until you find a good doc!!! Go for it and don't let anyone tell you any different!!! I wish you great luck with your new doc search.
In the mean time, if you have any more questions and concerns, we are here for ya!!!
I'm glad that I sound strong, because I am actually freaking out!! I am doing everything I can to not lose my mind. I am prone to spontaneous bouts of tears when I contemplate my possible future. I am still holding onto all hope that it could be something else. My boyfriend is doing his best, but is not really grasping what could be going on. He just wants me to hurry up and get it fixed. And I am terrified that the lifestyle I have always lived is over. My hobbies include skydiving, BASE jumping, and I just bought new skis! I want to use my new skis!! But I'm doing my best to stay positive. I think it will be easier to start dealing with things if I get some sort of answers whether they are good or bad. Right now I feel like my body is attacking itself and I don't know why. Aaaaahhh! Wow, it felt good to get that out.My RD did/said the same thing! I had to wait almost 6 months for the first complaint of hand pain and swelling before I was put on anything. I dod already take Naproxen for my OA, but that was my only pain reliever. The good news is I am not IN a horrible amount of pain, just enough to cause problems.Special -
I know the freaking out! I was sooooo there! I just couldn't believe these docs knew what they were saying - and they wouldn't give me a definate - just a 'well, it's probably...' or 'well, that symptom is unusual' etc. I felt that if I had a definite I'd at least know what I was fighting.
If you suspect Lyme - get thee to a LLMD - Lyme Literate MD. They do the IgeneX test. The CDC Western Blot and Elisa are faulty by their own admission. Lyme is one tough bugger - but 'cureable'. To me, it was worth the 5 test to know for sure one way or the other.
And listen to Milly - keep a diary - my one regret is that I didn't so I can only guess when things were happening in the beginning.
Grandma Kathy -
Hang on girl! Two steps forward, one step back!
Milly -
Hi Girl, how you hangin' in!
Pip
I made the Dr's office give me a list of the blood tests they were doing, because I was already mad, and wanted to know what they were doing. It said the lyme serologies, Igm and Igg or something like that. I will have to ask about the IgeneX thing. When they call with the results I will double check what all they did. And yes, it would be soooo much easier if I knew what was going on. I spend a lot of my time trying to figure out if it really hurts like I think it does, and whether new body parts hurt or if it's all in my head. It is a sucky thing to be obsessed with! Oh, and I admit I'm slacking on my symptom diary because I brought it with to this other doctor and he didn't want to listen to my symptoms, let alone read them!! I will get back to it though, I promise!
Also if you suspect lyme desease it dose not always show up the first time. I heard they have to take several tubes and send to several labs. It may be in your blood but not in the blood going threw your arm at the moment. Maybe that is what PIP is talking about. So even if you suspect and it dosn't show up have them try again later. This is why keep a diary. And don't give up without an answer. If nothing shows up in the blood and no one helps you and you get sick later you say this is what happened last time. But i bet you can get help before that.
Aaaargh! You are not catching a break!
The IgeneX test is available at special labs - that's how rare (read controversial) they are. You can Google it.
I don't suppose I mentioned www.roadback.org to you yet, did I?
Pip
I will have to check the roadback thing out. I don't know if I suspect lyme as much as wish for it at this point. It is a specific reason, with a possible cure, which is easier for me to swallow than RA. A few symptoms and the locations for catching it match up. I am supposed to call for blood test results on Tuesday, and I will base my next move on them. Sorry PIP! my info maybe out of date. I been asleep for a long time. Thats why i said while she has the energy.I don't know if you realized by yet, I'm an APer.
You are newly diagnosed - think about it! Please!
The book that explains it best is "The New Arthritis Breakthrough" by Henry Scammell - available on Amazon or you can order it from your local Borders or Barnes and Nobel.
They saved my life.
Pip
No, Milly, you're right, if you use the old tests it's hit or miss and hoping a microbe crawled into the vial. The new test is better because it looks at DNA strands but I think it can be faulty too. That's part of our problem - the tests we have are garbage yet the docs won't do much without a piece of paper in front of them.
Hugs,
Pip
P.S. Good night!
I agree that there's got to be a reason my body's doing this. Right now i am still hoping the doctor will give me a solid one. If not, I like the idea of AP and will try to make sure I find a doctor who is informed about it. I am so thankful for this board and all of the information you are all providing me!That was what sent me over the deep end after 150 years of not showing up on blood work and i got an RF positve then doc said we are waiting on the anti-ccp for 100 percent verification. I was then on pins and needles thinking they would take my positive RF away from me and still not treat me. I have that low of an opinion of the medical field. Then being so tired I went on there word that i was not ill other wise instead of running up to get the blood work and reading it myself. Well the hospital did no blood work my doc did blood work for RA and no cbc. And here i still can not the rid of this infection yet. I was slowly going back and fourth inbetween comas terribly sick with a pounding headache. Come on Docs. Now i am to sick to even try any RA treatment. It just isn't right. I have RA meds just can not take them. So i am still not treated.Special i here where you are coming from i always fiqured i had RA or Lyme desease as they are more known for not showing up on blood work. Thats how my head worked and i do not know how long it will take me to get my head back on straight of Doctors telling me i was not sick when i knew i was sick. It was just a real head trip. The reason i try to remember stuff at this point is to help other people. I have a big box of misdiagnoses and exrays of damage and old blood work. Well maybe more than one big box. LOLAnd Special - Milly is again right. I forgot! You need to make sure you get your labs at EVERY doc appointment. And notes - they are yours! Put them in a binder. I wish I had the foresight to think of that before so much time had elapsed and now I'm trying to build some sort of chart so I can note any differences per labs and see what's moving where. These MD's only focus on one thing and there are other clues. For me, it was the thyroid and every doc missed that one - even my AP doc. :-( And I LOVE him!
Pip
Oh i have not given up. I have thrush. Was worried this infection will never go away. I was pretty sick yesterday. And i am serious. I have some virus thing fliud in my chest. Still have one more cipro to take. Have thrush and active flare RA. I am really tuff and really sick, well i get angry some times and worried sometimes. I wasn't giving up just trying to come to terms with how sick i am. Some times i am just being sarcastic. As in my parents called me a smart alich. I was just saying how bad some doctors are. And even the good ones you have to watch. I my self go to the doctors and forget to ask for a certain med because i have so much different stuff. Surely the doctor might forget on occassion. And when your really sick and really tired it is even harder to fight for your self. We shouldn't have to fight for our selfs all of the time. But the truth is we have to keep an eye on even the doctors we like sometimes. And i personnelly don't want a doctor that is going to yell and blame me for the fact the medicine dosn't work or that they are wrong. Those doctors i am to sick to deal with and would not want if i was well. I have doctors appiontments made and am not given up. I have it seems a new problem everyday. I do not always know which is most important and it seems if i complain about all at once the docs think i am exageraterating. So instead of unloadeding all on one doc i made appiontments with all my specialist. I am going to have my specialist call and yell at the other docs and say i told you once i am telling you twice we have to treat these things to. So i am still doing all the work it seems. But i have done my fighting very well. I keep calling now this, i need this. Today it was just thrush on top of everthing else. I called said now this medicine i am allergic to all others and it's the weekend. You put a special note i do not want to go to pharmacy and find you called in something i am allergic to. Then i called back about two hours later. I said i know it is just thrush and i said i do fell a little better. I said but the truth is i keep gagging and vomiting and it is uncomfortable. The medicine was called in five minutes later. I just try to remind them i am not harrassing them i am just in need of some help at the moment and it isn't my fault.