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Shine
12-23-2012, 05:09 PM
This might sound like a silly question, especially as I've been seeing one for over a year...but what are they supposed to do?

Mine has done a very basic physical exam (moving joints about a bit), asked lots of questions related to pain and movement, done blood tests and prescribed meds.

Whenever I have raised a question relating to the difficulty I am having breathing I have always been told to speak to my GP, who then tells me to speak with my Rheumy, who then....you get the picture. Because I have been travelling and therefore changing docs quite regularly I have not really had the opportunity to get to the bottom and ever since I've just given up. So I'm just putting up with knowing there is something not quite right with my breathing but with no answers, and its getting worse. I know I have asthma but inhalers don't solve the issue.

But who should I be dealing with regading breathing problems? Rheumy? GP? Referral to someone else? I can't even get anyone to stick a stethescope on my chest! I know I need to put my foot down and get this looked into but I just want to be armed with the right info.

Thanks :)

tgal
12-23-2012, 05:30 PM
Sounds like my first Rhuemy (he sucked). I was lucky if I got 10 min with him. Truth is though, he is only going to deal with your actual non-organ relates Lupus issues. Your GP Is most likely not going to deal with anything Lupus related (unless you are really, really lucky). The wonderful news (insert sarcasm here) is that any time you are dealing with a potential organ issue you have to go to a specialist. For breathing issues you will need to see a pulmanologist. Someone should have told you that a long time ago. In my opinion, if your Rhuemy is not explaining to you about what is going on and who to see it may be time to consider finding someone that will

Shine
12-23-2012, 05:38 PM
Thanks Mari,

Thankfully I left that rheumy behind in Australia! Now I'm in NZ and waiting for a referral to my new rheumy. I shall also be asking for a referral to a pulmanologist (which, by the way, I have never even heard of) and trying to get to the bottom of it. I'm thinking I may have to head back to the UK because everything medical related is so expensive for me here, and its putting me off being fully commited to my own healthcare. At $220 a Rheumy appointment I know I can't afford many...thats more than my weekly rent!

PS. I love your sarcasm :) i'm a true believer in sarcasm being one of the best ways to deal with things/people that get on the wrong side of us!

SleepyInSeattle
12-23-2012, 05:53 PM
My rheumy (who I really like so far) basically says to see whoever I normally would for stuff (GP for most things, Derm for skin issues, Gyn for gyn issues, etc), but keep him in the loop on EVERYTHING. And he sends my GP all my labs, etc as well. It seems to work pretty well so far, but I have been lucky and not had a ton of complications.

tgal
12-23-2012, 07:09 PM
Glad you appreciated the sarcasm. It is one of my favorite forms of communication. LoL

i saw this and thought it would be helpfu


What is a Rheumatologist


A rheumatologist is an internist or pediatrician who received further training in the diagnosis (detection) and treatment of arthritis and other musculoskeletal diseases. Also called “rheumatic” diseases, these diseases affect the joints, muscles and bones. Many rheumatologists also conduct research to find the cause of and better treatment for these disabling diseases.


WHAT KIND OF TRAINING DO RHEUMATOLOGISTS HAVE?
Rheumatologists must first complete four years of medical school and three years of residency training in primary care (either internal medicine or pediatrics). After taking a national exam to become board certified, rheumatologists devote two to three years in specialized training in an accredited rheumatology fellowship program.


Most rheumatologists who plan to treat patients choose to become board certified in rheumatology after their fellowship training. If the doctor has trained in internal medicine, the subspecialty exam and certification are by the American Board of Internal Medicine. Physicians who trained in pediatrics take their board exam from the American Board of Pediatrics.


Rheumatologists who are certified by these boards after 1990 must complete an extensive recertification process every 10 years. This process shows they have kept their medical skills and knowledge up to date.


WHAT DO RHEUMATOLOGISTS TREAT?
Rheumatologists treat arthritis, certain autoimmune diseases (when the body comes under attack by its own immune system), musculoskeletal pain and osteoporosis. There are more than 100 types of these rheumatic conditions. A few of them are rheumatoid arthritis, osteoarthritis, gout, lupus, ankylosing spondylitis, osteoporosis, fibromyalgia and tendinitis. Some of the rheumatic diseases are very serious and can be hard to diagnose and treat.


WHEN SHOULD YOU SEE A RHEUMATOLOGIST?
If muscle or joint pains are not severe and began just a few days before, it makes sense to give the problem time to resolve on its own. But sometimes, pain in the joints, muscles or bones is severe or lasts more than a few days. At that point, you should see your doctor.


Many types of rheumatic diseases are not easy to find in the early stage, and you may need to see a specialist. Rheumatologists are specially trained to find the cause of joint swelling and pain. It is important for patients to get a correct diagnosis early so that proper treatment can begin. Some musculoskeletal problems respond best to treatment in the early stages of the disease.


Because some rheumatic diseases are complex, one visit to a rheumatologist may not be enough to get a diagnosis and treatment plan. These diseases tend to be chronic (long term) and often change over time. Sometimes they get worse, and sometimes they go away for a while and then return. Rheumatologists work closely with patients to find the problem and design a treatment plan.


HOW DOES THE RHEUMATOLOGIST WORK WITH OTHER HEALTH CARE PROFESSIONALS?
The role the rheumatologist plays in health care depends on many factors and the patient’s needs. Most often, the rheumatologist works with other physicians.


Sometimes the rheumatologist acts as a consultant to advise another doctor about a diagnosis and treatment plan. In other cases, the rheumatologist acts as a manager and relies on the help of many skilled professionals. This team may include nurses, physical and occupational therapists, psychologists and social workers. Teamwork is important, since musculoskeletal disorders often last a long time. Health care providers can help patients and their families cope with the changes these chronic diseases cause in their lives.

tgal
12-23-2012, 07:12 PM
PS... I completely understand the money issue. I went without any insurance for close to 3 years and my neuro charge just over $400 per visit. Needless to say I haven't seen him in years. Thankfully I get back on track in Jan so hopefully things will get sorted out! Best of luck to you

rob
12-23-2012, 09:06 PM
I think being the person in the dunking booth at the county fair is a good role for most Rheumotologists.

You could put an alligator in the water to enhance the entertainment value... (insert sarcastic smiley face)

Shine
12-24-2012, 01:52 AM
Obviously a huge fan of Rheumys then Rob? :-D
I think I'm going to start collecting specialists now...one for this, one for that...maybe we can get trading cards like the old football or Pokemon ones....I'll trade you my neuro for your dermo and your Rheumy...deal?

Thanks so much for that Mari. I think I know what I'm doing now!

rob
12-24-2012, 07:25 AM
Yeah, I've not had very good luck when it comes to Rheumotologists.

It seems like there is a disproportionately larger number of incompetent
and uncaring rheumo's out there when compared to other medical specialists.

Mica
12-24-2012, 09:05 AM
Sounds like my Rheumy, and she gets mad if I go to my primary doctor first. She gets mad if I do come in if I think I have a problem, or call, or don't call, or don't come in and she makes me feel like an idiot when she talks to me it's so irritating. This is the kind of doctor that doesn't really listen to her patients and only goes off labs. To her if im still walking or alive and my labs look good then to her I should be fine. If I say other wise she doesn't listen or do anything and she constantly saying it's because i'm depressed(which i'm not). She doesn't believe me when I say I don't drink sodas and coffee, I just get that look like oh your still going on with this lie you lying hypochondriac. Seriously thats what I feel she thinks and basically says with her tone of voice. If she wasn't my only option for doctor here in town I would leave her in a heart beat!

tgal
12-24-2012, 11:39 AM
Ugg! I hate that this is so common!

StarPhire
12-26-2012, 12:37 PM
I'm so hoping I can find a Rheumatologist here.. that doesn't suck. The only one I've ever seen was definitely a piece of work. I had months of lab results from my GP that indicated AI disease and inflammation. (how he diagnosed Lupus) I had bad Ascites and really bad Edema. I was quite frightening to look at, lol! All bloated up and limping in pain. But.. I "was fine". Oh, ok. Yes, dismissed by a rheumalotologist as not having ANY Auto-immune disease. It "wasn't in my DNA" she said. Oh wait... she wasn't the Rhumy at all, it was his asst, he was too busy to check me out himself. But SHE made the diagnosis of "Nothing". So, yes, I've often wondered what exactly we are paying these people for. Why do they even need to exist when so many of us seem to get the best care from our awesome little, old fashioned family practitioners? It's very frustrating to say the least. You'd think someone who has studied AI specifically would know there is not really a test like that. Personally, me thinks my insurance wasn't sufficient. or something. Blahh!

magistramarla
12-26-2012, 03:59 PM
I got a good chuckle out of this thread.
The excellent rheumy that I had in San Antonio checked everything, all of the time. Each time I walked into that office, all of my vitals were checked, I had to fill out a form about where I was hurting and what my concerns were, and the NP would go over everything and prioritize before I saw the doc.
The rheumy herself would take time to talk to me and would examine anything that I complained about. She had lots of diagnostic tools and even a lab right there in the office. She is also a personal friend of my PCP, and they had no problems sharing information.

The arrogant excuse for a rheumy that I have now gave me four minutes at my last appointment. All she does is renew my prescriptions and then hustles out of the room. I've also gotten the ping-pong thing - the rheumy says "see your PCP", then the PCP (who thinks I'm a hypochondriac) says "see your rheumy".
I recently tried another rheumy, and he proved to be one of those who looks at the lab work, not the patient. He tried to undiagnose everything that my good rheumy had diagnosed - sigh.

I'll be moving back to San Antonio in April, and even though I dread the heat there, I can't wait to see my great docs.
I LOVE Rob's idea.
Hugs,
Marla

steve.b
12-27-2012, 12:50 AM
i wanted to add something that was started a year ago.

http://forum.wehavelupus.com/showthread.php?10179-Is-this-your-rheumatologist

it might help you understand what a rhuemy really does....

Shine
12-27-2012, 04:57 PM
Steve, thank you so much for that! I think my last Rheumy had lessons from that guy!

Here's hoping my new one turns out to be better. I just want someone to understand I'm not a fat lazy teenager. I'm a 26 year old woman who has gained weight since taking steroids and struggling to walk distances (my form of exercise was walking everywhere, for miles!) I don't have bad hygiene...the reason 60% of my mouth is covered in cold sores is because that's what happens when I flare. I don't know why my joints hurt even without redness and swelling....but they DO hurt, don't just ignore that because I don't fit your text book model. And no no no it's not all because of my bipolar disorder...but YES I am friggin depressed a lot of the time because of being in constant pain and missing out on life.

Raaaaah rant over! Sorry guys, guess I'm just nervous about seeing a Rheumy again for the first time in too long. I try not to go in there on the defensive but I soon feel like I'm having to "prove" that I'm having problems.

If it turns out to be the guy in the video Steve posted then at least ill get a laugh out of it!

magistramarla
12-28-2012, 05:54 PM
I've been thinking about this thread.
When I worked with a midwife, she mentioned to me that for many of the poor, rural Moms that we saw, our pre-natal care was the only regular medical care that they ever got. That was why she read up a lot on spotting medical issues such as high BP, heart problems, etc. She also researched and made herself aware of where to refer the Moms for cheap or free medical care in the counties where they lived. Often these were Moms delivering a fifth or even sixth baby, so she was also very careful to refer them for contraceptive advice, if they were receptive to that. She is a "lay midwife", but she has a lot of training and is a responsible person. I think that a lot of obstetricians, at least the good ones, also realize that they are often the primary care provider for many women and tend to check for lots of issues and make lots of referrals while that Mom is under their care.

I think that rheumatologists need to have this attitude, too. For many patients who don't have insurance, or have very inadequate insurance, they may be the only doc that the patient sees regularly. If a person barely has the money to see one doctor, they might pick and choose which one they can afford to see.
For this reason, I think that our rheumy's should check vitals, blood, etc. often and should be aware if we are presenting with symptoms that could indicate an issue that might be out of their little box. They just might catch something before it gets serious and save a life.

I think that my rheumy back in Texas might have had this attitude. She seemed to have a lot of patients who were elderly and were badly crippled with various forms of arthritis. Knowing that San Antonio has a fairly high poverty rate and little help from the state, she might have been the only doc that those folks were seeing. I'm thinking that might be why she and her staff were so careful to check each patient so well.
I truly admire her for that.

My current rheumy is the total opposite, and I don't have respect for her. She has no staff other than the receptionists who collect the fees. My last appointment lasted four minutes - I paid $30 and my insurance paid $190. She doesn't even carry a stethoscope and doesn't bother to physically examine me. As someone else mentioned on this thread, she doesn't even check my heart rate or BP. I keep track of that myself by using the machine at the pharmacy.
I think that our rheumatologists need to take a lot more responsibility for the well-being of the patients in their care.
Just my two cents worth...
Hugs,
Marla

Shine
12-28-2012, 10:21 PM
You really come up up with some great points Marla.

I am horrified to hear that your last appointment was 4 minutes long...that is absolutely disgusting! And how dare she charge $120 dollars for 4 minutes?! What exactly makes her think she and her 4 minutes of service is worth that?!

Are you putting in a complaint? She shouldn't be allowed to get away with that. I'm sure the insurance companies would be appalled to know that they paid out $190 for her to barely look at you!

tgal
12-29-2012, 10:32 AM
Sadly Marla's story isn't uncommon. My first rhuemy never spent more than 6 min with me. EVER! The second one spent 15 and I thought I was in heaven (I wasn't). The sad truth is that we go in not knowing what we need or what to expect so too often we get bad care and don't even know it

Shine
12-30-2012, 03:59 PM
6 minutes...disgusting! How can they justify this?!

I think that's one if the great things about this forum..we can learn so much from others experience and get to know a little more of what to expect, what questions to ask and I know it gives me a little bit more confidence in talking to doctors..I'm better at putting things into words if I've already chatted over it on here with you guys. Sometimes I feel like I live on this forum and devote too much time to thinking about lupus but I think it's a great thing for us all.

Thank you everyone x