I will try not to make this a novel. So I saw a Rheumy for the first time a month ago. After going to Dr, being sent to Neuro and then Rheumy. I wasn't going to even go to this one, but they called me with an appointment.
He spent all of about 10 minutes with me and said I think it is Psoriatic Arthritis wrote it down and said research it. I had a tiny spot on my elbow, have some in lower scalp and I'm pretty sure my nails are affected. Also when this all started (which seemed like overnight) it seemed like I had perpetual pink eye, which seems to go with this. Sent me with lab work and x-ray orders. This is when I joined the board thinking finally have some answers for all the pain I've been in the past almost year. Started in lower back, neck, moved to distal fingers, then feet and I feel it a lot in my thumbs. I don't even really have a lot of swelling, sometimes in two of my fingers.
Went back yesterday and all x-ray and lab work was normal even HLA-B27. Only glaring thing was low WBC. He just chatted a bit hadn't looked at anything until I go there. We decided to do an MRI of my back as that is where I have the most pain, stiffness etc. Said just to stay on NSAID and I will for pain, but my blood pressure seems to be rising from those. I have chronically low blood pressure like 101/65 and the last two times it has creeped up. It was 127/76 yesterday which I know is normal, but not normal for me and I don't want it to keep rising. He said it could be from pain or from NSAID. I'm on Meloxicam, but he suggested maybe Aleve as Meloxicam was making me really bloated and slowing down my system in general.
Current Rheumy has me coming back in 2 months and I think it is a wait an see right now. Will MRI show anything further?
I still have an appointment with the Rheumy I chose. I just want someone to dig deep and figure this out. HOWEVER, how long should a Dr. spend with you and should they look at you from head to toe. If they don't see changes is it best to take a wait and see approach?
The Rheumy office I have chosen has everything in their office as well, no having to go from place to place to place.
I should add, I am part of EPO so can go to anyone I want in the network in any state. This is the Rheumy that my Primary was recommending so she must have called him and their office probably had a cancellation and called me. That is how I ended up at the "appointment I wasn't even going to go to." I never even called the office to make an appointment as I was researching Dr's and his reviews were so so.
The MRI can show soft tissue involvement such as tendon inflammation. I have very little problems with my joints, just the tendons surrounding the joints. I was glad to finally have an MRI done so that my doc could see where my inflammation is. I always prefer to have more information than last, so if it were me I would get the MRI.
How long should a doctor spend with you? My opinion is that a doctor should spend long enough with you to complete a thorough head to toe exam, review your lab work, review the treatment plan, and answer any questions that you may have at the moment. A doctor who rushes you through your visit is not a doctor that you should be interested in forming a relationship with. If you have another doctor lined up that you would prefer to see, then do that. You shouldn't have to dread dragging yourself into the office.
"Wait and see" might be the best treatment for you right now. Most doctors aren't going to want to treat something that they're not sure of, and it doesn't sound like this Dr. is very sure. It may be, that when you go into see the next rheumatologist, they will draw a new set of labs and discover something new. It's not unusual for patients to test negative for the HLA B27 marker. It's also not that unheard of for patients to have a normal inflammatory panel as well. I am one of those patients – my inflammatory markers have always been normal even during my worst flares. When I was diagnosed, I had classic symptoms including: sausage fingers, sausage toes, joint swelling and redness, and a 15 year history of psoriasis. My only abnormal lab values have been a positive HLA B 27, a high ANA and a positive rheumatoid factor.
As far as the NSAID goes, I'm not really sure what advice to give. They all carry equal risk of raising your blood pressure. The only thing that I could think to do is to cut sodium and caffeine out of your diet while you're taking the meloxicam. It could make the difference in keeping your blood pressure in the normal range for you.
I'm sorry to hear that you're experiencing so much frustration. I hope the new Dr. is able to shed some light on things for you.
The MRI might really help with diagnosis, and/or making treatment decisions. I would go ahead and get that in preparation for the next appt in 2 months. It is possible, as Grumpy Cat said, to have completely normal labs. I was diagnosed 6 yrs ago with completely normal labs, have never had an abnormal SED rate even, and just mild anemia. Yet I have joint damage, and soft tissue damage. A good rheumy will do a physical exam every time.
I just saw my rheumy today. We start off discussing how I am doing, any specific complaints, comparison to last visit. She'll then do a head to toe exam, feeling for swollen joints, hot joints, listen to my lungs, and go more in depth with any areas that are specifically bothering me. This happens every 2-3 months.
Just a word about lab tests and even imagining. Theses aren't quite like a "strep test" where a positive means you have strep and a negative means you don't. the actual results have meaning. A low white count has no meaning but a low white count with a higher RA number is very significant. Especially if it changes...... Same with ESR or CRP. It takes several readings to indicate a trend. That little range of "normal numbers" off to the side means nothing. Neither does an individual number.
Stay on the NSAID until he tells you different where those numbers go after a few months of regular NSAID uses are also significant.
The MRI might really help with diagnosis, and/or making treatment decisions. I would go ahead and get that in preparation for the next appt in 2 months. It is possible, as Grumpy Cat said, to have completely normal labs. I was diagnosed 6 yrs ago with completely normal labs, have never had an abnormal SED rate even, and just mild anemia. Yet I have joint damage, and soft tissue damage. A good rheumy will do a physical exam every time.
I just saw my rheumy today. We start off discussing how I am doing, any specific complaints, comparison to last visit. She'll then do a head to toe exam, feeling for swollen joints, hot joints, listen to my lungs, and go more in depth with any areas that are specifically bothering me. This happens every 2-3 months.
Thank you for the suggestions. I think I am going to see this second rheumy that I have chosen based on research. I do appreciate the lab/blood and now MRI thoroughness of the first (current) rheumy, but not the time. Literally when I went the first time, he did not do a head to toe, and check everything. And when he came to his conclusion just gave me a piece of paper with the name and said you can research it online. He probably spent a whopping 15 minutes with me and this was a first appointment. What should I expect from the next one? I will take all the labs to him as well, no need to repeat them a few weeks later. I'm assuming a good Dr. will understand my explanation as to why I saw the other one and am now seeing him?
I do plan on having the MRI done at the beginning of the year. I'm totally not up to par with everything, but when this came out of nowhere I remember my hands feeling like they were on fire and my hands, neck and back being in tremendous pain. Now it depends on the day or the week. How do you know if you are in a flare?
I don't mean to be trite, but if you have to ask if you are in a flare, you're not. You will know. just make sure the firearms are locked up and the booze hidden.
I would NOT go into another docs office to bash the previous one. Otherwise, you will put the new doc immediately on the defense. Just tell them that you had a recommendation and wanted to see the new guy instead. The worst think a patient can do is to shut the relationship down with mistrust befor it can even start.
What Lamb said… That’s a flare. If you aren’t trying to escape from your body, then you’ll be okay.
Thank You, but that was never my intention. I had never planned on seeing the first Dr, but when I suddenly got a call and the one I planned on seeing there was a 2 month wait I figured I would accept the appointment since it was who my primary recommended. I never even called the first one, they called me. But, I didn't really like (saying out loud here) that he spent a total of about 15 minutes with me, didn't do a full exam from head to toe on that first appointment. I'd say he did about 1/4 of an exam.
I do feel I should take in all my records, because there is no need to have a second set of everything 2 months after the first set.
Anyhow thank you for all your replies. I think I will tiptoe out of this forum until I know what is going on. "I don't mean to be trite, but...." This kind of stuff scares new people who are not informed and trying to learn away.
I have not really done research on this until a few weeks ago and then still don't focus on it. Too much going on in my life and don't want to be Debbie Downer. It seems like with any chronic illness everyday is something new and you learn to live with it. Right now I could rip my leg off because it just hurts to touch, no idea why it just came on out of the blue today.
Best wishes to you all.
GrumpyCat said:
I would NOT go into another docs office to bash the previous one. Otherwise, you will put the new doc immediately on the defense. Just tell them that you had a recommendation and wanted to see the new guy instead. The worst think a patient can do is to shut the relationship down with mistrust befor it can even start.
What Lamb said... That's a flare. If you aren't trying to escape from your body, then you'll be okay. :-)
Tamee–sorry your leg is giving you fits. That’s a bummer. Sounds like your insurance gives you a great chance to see a second doc who will, hopefully, do a good physical exam and also talk to you about your aches and pains and your ability to perform routine tasks. I’d be running or limping for that second opinion. Good luck!
I didn't mean to sound harsh. I have been through several rheumatologists for one reason or another, and understand that it is one of the most important relationships that you can have with a health care professional. I just recommend not really mentioning the other doc and your reason for moving on. Obviously, it is your right to choose whichever doc you want to see and should feel comfortable with that person. It does not sound like he gave you the attention that you needed and that is reason enough to move on. It's just that there are a number of ways to say this to the new doc that won't seem off-putting, like," I wanted an office that has all of the services in one place" or "their office seems very busy". They're mild statements that don't sound accusatory like, "He didn't spend much time with me" might seem. Docs can be weird and fraternal. It's also a small community and they likely know each other. That's why the less said, the better.
Absolutely, take your records with you. You have already had x-rays and there is no need to repeat those so soon. I will warn you that they may want to repeat labs because the numbers can change pretty quickly. Get used to the idea of frequent blood draws! Also, these labs give a nice baseline for the new doc to compare new results with.
For your upcoming appointment, I'll bet that you have lots of questions, especially since you didn't get many answers on the first one. Even with docs who spend more time with there patients, there is a limit to what they can cover in that period of time. Try to think about what questions are the most important to you and write those down. Then get on the Google and start looking for information on those topics from good sources like the NIH, or Medline, or the Arthritis Foundation or Mayo. Try to learn about each topic before you go. That will make any conversation you have much more meaningful to you, you will be able to ask good follow up questions and make good use of limited time. A good place to start is what the doc's plan is for treatment and why that is the plan. Follow up with what you should be looking for and how he plans to measure success of the treatment.
Again, I am sorry if I sounded harsh; it was not my intent. I just did not want you to make a mistake that I have made myself. You will find a good doc eventually. Hopefully, you won't have to kiss too many toads first. :-) Tamee said:
Thank You, but that was never my intention. I had never planned on seeing the first Dr, but when I suddenly got a call and the one I planned on seeing there was a 2 month wait I figured I would accept the appointment since it was who my primary recommended. I never even called the first one, they called me. But, I didn't really like (saying out loud here) that he spent a total of about 15 minutes with me, didn't do a full exam from head to toe on that first appointment. I'd say he did about 1/4 of an exam.
I do feel I should take in all my records, because there is no need to have a second set of everything 2 months after the first set.
Anyhow thank you for all your replies. I think I will tiptoe out of this forum until I know what is going on. "I don't mean to be trite, but...." This kind of stuff scares new people who are not informed and trying to learn away.
I have not really done research on this until a few weeks ago and then still don't focus on it. Too much going on in my life and don't want to be Debbie Downer. It seems like with any chronic illness everyday is something new and you learn to live with it. Right now I could rip my leg off because it just hurts to touch, no idea why it just came on out of the blue today.
Best wishes to you all.
GrumpyCat said:
I would NOT go into another docs office to bash the previous one. Otherwise, you will put the new doc immediately on the defense. Just tell them that you had a recommendation and wanted to see the new guy instead. The worst think a patient can do is to shut the relationship down with mistrust befor it can even start.
What Lamb said... That's a flare. If you aren't trying to escape from your body, then you'll be okay. :-)
Thank you and thank you for the message. This makes sense, to not mention the other Dr. in the ways you state.
I appreciate the insight. GrumpyCat said:
I didn't mean to sound harsh. I have been through several rheumatologists for one reason or another, and understand that it is one of the most important relationships that you can have with a health care professional. I just recommend not really mentioning the other doc and your reason for moving on. Obviously, it is your right to choose whichever doc you want to see and should feel comfortable with that person. It does not sound like he gave you the attention that you needed and that is reason enough to move on. It's just that there are a number of ways to say this to the new doc that won't seem off-putting, like," I wanted an office that has all of the services in one place" or "their office seems very busy". They're mild statements that don't sound accusatory like, "He didn't spend much time with me" might seem. Docs can be weird and fraternal. It's also a small community and they likely know each other. That's why the less said, the better.
Absolutely, take your records with you. You have already had x-rays and there is no need to repeat those so soon. I will warn you that they may want to repeat labs because the numbers can change pretty quickly. Get used to the idea of frequent blood draws! Also, these labs give a nice baseline for the new doc to compare new results with.
For your upcoming appointment, I'll bet that you have lots of questions, especially since you didn't get many answers on the first one. Even with docs who spend more time with there patients, there is a limit to what they can cover in that period of time. Try to think about what questions are the most important to you and write those down. Then get on the Google and start looking for information on those topics from good sources like the NIH, or Medline, or the Arthritis Foundation or Mayo. Try to learn about each topic before you go. That will make any conversation you have much more meaningful to you, you will be able to ask good follow up questions and make good use of limited time. A good place to start is what the doc's plan is for treatment and why that is the plan. Follow up with what you should be looking for and how he plans to measure success of the treatment.
Again, I am sorry if I sounded harsh; it was not my intent. I just did not want you to make a mistake that I have made myself. You will find a good doc eventually. Hopefully, you won't have to kiss too many toads first. :-) Tamee said:
Thank You, but that was never my intention. I had never planned on seeing the first Dr, but when I suddenly got a call and the one I planned on seeing there was a 2 month wait I figured I would accept the appointment since it was who my primary recommended. I never even called the first one, they called me. But, I didn't really like (saying out loud here) that he spent a total of about 15 minutes with me, didn't do a full exam from head to toe on that first appointment. I'd say he did about 1/4 of an exam.
I do feel I should take in all my records, because there is no need to have a second set of everything 2 months after the first set.
Anyhow thank you for all your replies. I think I will tiptoe out of this forum until I know what is going on. "I don't mean to be trite, but...." This kind of stuff scares new people who are not informed and trying to learn away.
I have not really done research on this until a few weeks ago and then still don't focus on it. Too much going on in my life and don't want to be Debbie Downer. It seems like with any chronic illness everyday is something new and you learn to live with it. Right now I could rip my leg off because it just hurts to touch, no idea why it just came on out of the blue today.
Best wishes to you all.
GrumpyCat said:
I would NOT go into another docs office to bash the previous one. Otherwise, you will put the new doc immediately on the defense. Just tell them that you had a recommendation and wanted to see the new guy instead. The worst think a patient can do is to shut the relationship down with mistrust befor it can even start.
What Lamb said... That's a flare. If you aren't trying to escape from your body, then you'll be okay. :-)
