well today was my big see the Rhummy day.
The office is tucked ina bldg that has x rays, ortho docs, phyisical therapy, hand docs, all in the same building.
So I was nervous as all hell and even tho I am in pain and suffering I so keep hoping to God this is something besides RA . So the doc seems nice but for the life of me I have no idea where he is from but he kinda looks Indian he was nice and so we went thru symptoms he and his med student yup this is a teaching university hospital so I should have expected this examined me.
The RD says' well so far no bloodwork shows RA and my exam of you today I see no signs of RA however we will take more blood looking for very specific stuff ccp? and some bla-12 marker.
He said the worst case this is RA and if it is we treat very very agressive at this University in fact our treatment is very hard hitting with multi drugs because we beleive we simply can not wait for RA to catch up with us so we treat hard and aggressive. The good news is I do not think this can be RA usually by now we would see some physical sign but we will test more and then I asked about x rays and he said yes we will x ray your hands because if it's RA thats where we will see it first. So in some ways I am glad but have to wait for more bloodwork and these x rays now.
I asked him about my anti biotic and he said and this was very Interesting.. I have no problem with you being on minocin for now in fact we use this as a regular treatment in this university. So that was surprising I mean he's not a ap doc and he was all for the use of ABX in arthritis treatment he said its a good treatment. Then he was kind of surprised and said who put you on it? and I said well I kinda asked my pcp and he was like well ok but if these other bloodwork comes back negative and we have no evidence of ra at all then I am not sure keeping you on it will be needed we need some evidence that you have a rhumatic disease right now there is zip none.
but I sure hurt thats the suck part having the docs have no clue yet. in some ways I am keeping my hopes up that it's not ra I don't think anyone wants that having the docs quessing is no good either but onward i go.
I will ask for MRI if the x rays show nothing and the bloodwork comes back neg. If the MRI shows nothing well then I don't know I'll be the mystery pt.
right now my diagnosis is ... Joint pain.
So I am in medical limbo land for now he said just keep doing what your doing for now and your pcp has to treat pain I am just your rhummy? yup his exact words I am just a rhummy.
hmm I thought the rhummy was the guy who had all the training hehehehehehehehehe. why don't rds treat pain?
that baffles me.
SO more bloodwork some xrays and waiting......
Hmmmmm.....
While I'm not saying I'm a doc, and know whats wrong - the statement that they would see RA in your hands first is pretty much bogus. That bothers me...You'll have a lot of people on here telling you what they think....That's all I have an opinion on at this moment.
Sounds like you did find someone who's very willing to treat you and who listens to you, and that is GREAT. I'm glad for that!
i hardly have any RA in my hands. Mine showed up first in my feet.My RD treats my pain.
Sorry you didn't get further in your answers as you'd hoped. I'm sure it's hard being in limbo like you are and in so much obvious pain.
Have you used predisone before? When I was first dx'ed that was one of the indicators used to determine that I had an inflamatory illness. If the predisone helps it's like saying Yes; it's obvious there's inflamation involved.
Mark, I am sorry you did not get all the answers today but at least they are checking things out. I have read the usually ra afflicts the smaller bones of the hands and feet first but I do not know this for sure. Do your hands hurt? I would think it is possible for the ra to show up in other parts of your body. My rheumy pretty much did a full body x-ray, something like 18 x-rays in all. I would question why they are only doing your hands.
As far as the pain meds, if you are in pain from ra or some mystery joint thing, than the doctor treating that, the rheumy, seems to most likely to give you to pain pills?!
I know its frustrating not have a "true" dx yet. As you said, no one WANTS ra but its nice to know why we hurt so much. All my blood work is negative. However, I do have the classic x-ray changes. Right this moment, I am labeled seronegative ra. I do seem to have something else going on and I am not 100% convinced of the dx but I am going with it for now. I am doing weekly humira and mtx injections and currently trying to get off steroids.
Being on steroids really sucks to be honest but a short dose pack may help get things under control for you. Did they say how long it would take for your test results?
Very interesting but different.
I had a recent surgery and was low on pain meds and happened to be at my rhuemys office. I asked him for a refill on my pain meds and he was a pain in the butt about it because I had pain meds from another doc... refill should have come from my surgeon.
I argued my case that I would be out of pain meds on Thursday but would not see ortho until Friday afternoon. I told him if he was that nervous about it to write a script for 4 pills, but I was insulted because in the 3 years I'd been his patient I'd never asked for narcotics only nsaids, and to check his records to verify. He wrote me a 1 month script.
So maybe that was where your doc was coming from - your pcp had been writing your scripts for pain meds?
If your feet hurt worse than your hands have those xrayed instead, usually shows first in hands or feet.
4 weeks uggg. and I had to ask for the x ray he would have let me walk away with just another blood test.
I quess if you don't fit some mold you confuse the hell outta them I quess?
not sure why 4 weeks but.. and I don't know why the pcp has to treat pain maybe since he can't find some aha thats arthritis thing with me he's relunctant?
anyways so that was my RD experience hehehe.
SO if the xrays show nothing and I stil hurt I will have to press them for a mri... its just kinda sad I have to ask they should be doing this stuff I think.
I think to many docs look at bloodwork only probably more than they like to admitt.
and if the mri shows nothing and I hurt well crap I don't know after that then I'll be in medical never never land I quess.
Mark, I just got xrays of my hands and feet for the first time today. After 6 years, you'd think they would done those and I had to demand them which I did after Roxy told me about hers.
RA didn't hit my joints as hard as it has hit my organs. And, the Rheumy from hell took the attitude that I don't have RA based on good bloodwork.
Part of the problem with the blood work is that inflammation comes and goes. Maybe they have finally suppressed the RA. That would be a great thought. However, it doesn't explain why my hands and feet are hurting me now so much after going off both the Enbrel and MTX. Or, why as I try to taper down on Pred, my pain overall is really intense.
You just have to do what you are doing and push these doctors for answers. If it does come back all clean, then say, "Don't leave me hanging here. I know something is wrong and I want it investigated further." They may send you away for another opinion and that will tell you a lot about what kind of doctor they are. You will be better off at that point with a second opinion.
Regarding the pain medications, the problem is the number of people who are abusing these type of medications. Doctors want to stay out of the middle of this because the federal government can come down hard on them if they prescribe something they shouldn't. That's why there is such a big push to send people to Pain Specialists. But this attitude leaves a lot of people in a bad spot. Some pain specialists make you sign legal documents and require blood and urine tests to make sure you are not over taking your medications. And, they will cut you off. With something like RA and FM where you get flares, I think this isn't a very good strategy.
I would rather have my Rheumy prescribe my pain meds and many of them do because if he is worth his salt then he will have a good idea how much pain I am in. It is important that only one doctor prescribes the meds. You probably can get your primary to do it by having the understanding that you are only going to go through him for them. Otherwise, ask to see a pain specialist. But try and find one that deals in both alternative treatments like injections, biofeedback, ultrasound, etc as well as medications.
But you have definitely made progress. If nothing shows up on the hands and feet, then ask for xrays of the areas that bother you the most.
Mark I do understand as I didn't fit the rheumy's mold but found Palindromic Rheumatism on my own and then the rheumy agreed, lol. I then soon became obvious RA. It may take a while for your symptoms and tests to become more obvious and hang in there while waiting.Mark, I had hands and feet xrays done last year. During my visit last month,Hmm this all makes me wonder too.
It makes me wonder what the h*$@ they consider damage????
On some of my older reports (early elamentary school age) they state damage in my left wrist and right knee.
I had an MRI done on my right knee when I had my last Baker's Cyst back in 04 - some how they did not see "any significant damage"
HOW?!?!? I don't understand it. I am going to have SOOOOOOOOO many questions for my doctor when I finally get to see one.
Hang in there. It can take a long time to get diagnosed with an autoimmune disease. Took me 8 years.Mark - you may get your answer from that latest bloodwoork, especially the CCP. An internist I saw recently told me that they are really using that test now to diagnose cases of seronegative RA, which I guess previously would have been dismissed by docs who only go by bloodwork. All the best, Pat