Need Some Advice Finally Have an Appointment with a NEW Rheumy!

After many months of waiting I have an appointment in the middle of Nov to see a new Rheumatologist.  It looks promising as I was told it would take an hour.  I don't believe I ever had more than 10 minutes with the other guy.  Based on your own vast experience with your Rheumies do you have any words of advice?

I have an appointment with my GP next Friday so we can go over some things as there is the little issue of our Rheumies not stealing other Rheumies clients.  I know I am going to have trouble explaining the meds I have been on without saying I've been seeing a local Rheumy.  I am sure hoping my GP can help with that one.  I am hoping I can be honest and say I know I cannot be cured but I would like to feel like I am being heard and have my questions answered with intelligent and appropriate answers.

bigted

[[ I am hoping I can be honest and say I know I cannot be cured but I would like to feel like I am being heard and have my questions answered with intelligent and appropriate answers.]]

I think that's a perfectly good thing to tell your new rheumie. Be as straightforward with him as you want him to be with you.

I also like to ask my new rheumies why they chose rheumatology. My current one gave the right answer - "I like solving puzzles."

Bigted, I agree with Carolan put it right out there and ask him/her why they chose rheumatology.  Even though we have a lot of Rheumy's here in the Philadelphia area, they still have the same close nit of not stealing other doctor's patients. Though as I have stated to mine when I switch is that "Dr. So N So and I didn't agree upon my treatment options or we had a difference in opinion on my progress to improve.  The second usually gets their attention if they have answered in the response Carolan states: "I like solving puzzles." 

Your relationship with your Rheumy is one of the most important ones because that is the person that you work with to IMPROVE your progress and health from this disease. As my primary has stated she is now the backseat driver and my Rheumy has the first call on any treatment except for antibiotics due to my compromised immune system then she is my first line of defense.  My Ortho has stated the same, as long as my Rheumy agrees that the surgery is the best avenue then we move forward. 

We own the management of these medical professionals and our Rheumy's should be the ones supporting that, (mine does and enjoys it actually). So I wish  you all the luck with your new relationship and I am around if you need to chat.

Tess

Your rheumy should value your input and your  awareness of what you feel in your body, and your knowledge of what does or does not work, as being the most important part of figuring out the puzzle.  My rheumy values my input, my desires and  I feel that treatment decisions are reached together.  I wish you all the best in finding a compassionate doctor, who listens and respects you, who understands how baffling this disease can be, and can really help you. 

Big Ted,

Let us know how it goes w/ the new guy/gal.  I can't wait to hear about it!

- Kati

The appointment went really well considering the diagnosis of Fibromyalgia.  He was a little late in seeing me but I expected that.  He even apologised for it.  He came and got me from the waiting room and directed me to his office. We talked for a long time about why I was there and not with the other one.  He queried the extensive number of narcotics I am on and who prescribed them.  But did not suggest I didn't need them but implied that someone else should have questioned why I needed them (read other Rheumy should have questioned my pain).  We talked about what I understood RA to be and what I thought I had.  I said the RA was confirmed with the knee replacement and what I believed RA to be, but felt the pain was not RA related.  He agreed.  I said I think I have fibro and he didn't disagree.  It was a very equal conversation and there was a lot of talking.  We talked more in the 40mins I was with him than I ever spoke to the other twit ( I am actually seething as I type and easily could use a much stronger word). After his exam he outlined his action plan and what he wanted to do.  He said he wants to look after the RA but has someone else in mind for the fibro.  So after more X-rays than the last guy took in 10 years and blood work I head back to see him on Dec 22.This is so different and I feel so much more respected as a patient.  My mom is now asking her GP so she can meet with him too.

bigted

Sounds like you got yourself a good Dr. finally!!!  I am happy for you.

Bigted,

This is the way it is suppose to be with your Rheumy lots of conversation, otherwise you can go to a GP get meds and walk out!! RA is more then just the swelling and pain there are so many other symptoms and side effects that go along with the disease and the medications. If they are not talking with you how do they know what they are prescribing is working or not effecting something else in your body.  There are too many side effects from these drugs to take those chances.

I am so happy for you that you found someone that will listen and has an plan of attack on this disease, I pray for you every day to find relief from what these diseases bring. 

Keep us posted.

Tess

Hi Bigted,

Well done on the new Rheumy, it's good to persevere as you will probably be with this guy for a long time.   Don't seethe anymore, just let it go now as it's only you thst sufferes from the tension of carrying anger.  

I smiled at your use of the word 'Twit' as I thought this was a very typical English expression and I haven't heard it in more than thirty years.   I'm afraid much stronger words are used in everyday conversation now by an awful lot of people without a second thought.

Anyway Bigted I just wanted to wish you well as it seems that you have turned a corner at last.

Dozey.

Ok this is all new to me, I have been going to my primary care and a pain mgt doctor and i am just getting worse.

What does a Rheumotlogist do? And how do I find one?

In theory they look after the care and control of RA, OA, Lupus Fibro etc.  They are specialists like a Bone Doc looks after bones and the Gastro Doc looks after the digestive system.  I'm in Canada and we have to be referred to a Rhematologist before they will see us.  I can't just show up at an office and say I have RA can I have an appointment. 

My previous rheumy fit the perfect mold for how not to do his job.  He failed in all aspects of his job and failed to properly diagnose and treat my diseases.  Everyone else who regularly writes here will tell you that and can tell you what makes a good Rheumatolgist.

My GP put it this way - I can't manage your disease as it requires many medications and is complicated.   I do not feel confident in my skills to manage your disease properly.  I think he has it pegged right that a Rheumy's role is that of a disease manager.  They should listen to what is going on and be able to provide the right support - medications and other support - ie rehab, physio, mental health etc.  I'll leave at that and I know the rest of the board can add to that as it is their conversations that told me I was getting a bum rap with mine and I needed to get out quick.

bigted

Stephanie,

Bigted is so right, a GP (Primary care Physician) is limited on treament for Arthritis diseases. There are over 100 rheumatic diseases from Osteo Arthritis, Lupus, Rheumatoid Arthritis (which is mostly confused with OA) Fibromyalgia, Sjorgrens Syndrome and etc.

These disease have a lot of common symptoms and can be treated with a lot of the same medications though not all of them! 

I made the big mistake and insisted in only allowing my Primary to treat me and didn't go to a rheumy for years, if I had gone I would have known about the more advanced medications to treat the pain and the progression of the diseases.

A Rheumatologist is a specialist in these diseases. It is like if you break a bone you go to an orthopedic doctor not your primary care to have it reset or treated. It is the same with Arthritis you should go to a specialist that will help treat the disease either with pain management, physical therapy, occupational therapy some even recommend Chiroproactic care. 

It is  your call but what is there to lose if you go to a Rheumy for a consult. I know that my primary care doctor was running all the incorrect tests for my RA for the longest time and wasn't aware of how severe it was becoming, she tried her hardest to convince me to go to one. When I wouldn't she called on got the list of tests to run and then walked me through them and this is what convinced me to go back to one.  If she had not done so, I can tell you I would be in worse condition now.  The rheumy readjusted all the meds she has prescribed and added some which have been a great help in me now living my everyday life.  (not cured not totally pain free but I can now manage with limited use of my walker and/or cane).  I am 46 years old and I felt like I was 90 and hated waking up in the morning. 

One of the key things is to find the RIGHT Rheumatologist that will listen and be your partner in your treatment of the disease.  It is your body, the disease is attacking YOU...you have all the final decisions of any medications you take, be a leader of that treatment.

I manage my team of doctors and they know I manage them and they have actually stated they appreicate the research the knowledge that we on Creaky have since we educate and share experiences.  As my Ortho states he is just the carpenter, the Rheumy is the guy in charge of what should be done but I have the final decision and there is no treatment of any kind with out my knowledge and understanding of what the implications are. 

Okay I am getting off my soap box.  Steph remember you only have one body that can not be replaced, do what you believe is right in  your mind and your heart to take care of it the best way you know how and means at your disposal.

Good luck if you need anything just send me an email through creaky account and I will call you or you can call me.  Always here to help and sorry if I sound like I was preeching just don't want to see anyone make the same mistakes I did. 

Tess

Tess and Big Ted

Thank you both for the advice!

Tess...stay on that soap box..lol I am 49 years old and since February of this year I feel like I am 110 years old. I too alternate between a cane and a walker,

I did start going to a pain mgt doctor back in March. She just precribes more meds and they used massage and heat therapy. I personally found limited comfort in this method. Now due to insurance issues I have not been there since july. It now looks like after all my battles I will be able to pay out of pocket for insurabce so I can  get back to my doctors until medicaide kicks in. I will look up a few  Rheumotoligist.

Who would have thought I would be going through all this at my age!

Previously TessaD wrote:

Stephanie,

Bigted is so right, a GP (Primary care Physician) is limited on treament for Arthritis diseases. There are over 100 rheumatic diseases from Osteo Arthritis, Lupus, Rheumatoid Arthritis (which is mostly confused with OA) Fibromyalgia, Sjorgrens Syndrome and etc.

These disease have a lot of common symptoms and can be treated with a lot of the same medications though not all of them! 

I made the big mistake and insisted in only allowing my Primary to treat me and didn't go to a rheumy for years, if I had gone I would have known about the more advanced medications to treat the pain and the progression of the diseases.

A Rheumatologist is a specialist in these diseases. It is like if you break a bone you go to an orthopedic doctor not your primary care to have it reset or treated. It is the same with Arthritis you should go to a specialist that will help treat the disease either with pain management, physical therapy, occupational therapy some even recommend Chiroproactic care. 

It is  your call but what is there to lose if you go to a Rheumy for a consult. I know that my primary care doctor was running all the incorrect tests for my RA for the longest time and wasn't aware of how severe it was becoming, she tried her hardest to convince me to go to one. When I wouldn't she called on got the list of tests to run and then walked me through them and this is what convinced me to go back to one.  If she had not done so, I can tell you I would be in worse condition now.  The rheumy readjusted all the meds she has prescribed and added some which have been a great help in me now living my everyday life.  (not cured not totally pain free but I can now manage with limited use of my walker and/or cane).  I am 46 years old and I felt like I was 90 and hated waking up in the morning. 

One of the key things is to find the RIGHT Rheumatologist that will listen and be your partner in your treatment of the disease.  It is your body, the disease is attacking YOU...you have all the final decisions of any medications you take, be a leader of that treatment.

I manage my team of doctors and they know I manage them and they have actually stated they appreicate the research the knowledge that we on Creaky have since we educate and share experiences.  As my Ortho states he is just the carpenter, the Rheumy is the guy in charge of what should be done but I have the final decision and there is no treatment of any kind with out my knowledge and understanding of what the implications are. 

Okay I am getting off my soap box.  Steph remember you only have one body that can not be replaced, do what you believe is right in  your mind and your heart to take care of it the best way you know how and means at your disposal.

Good luck if you need anything just send me an email through creaky account and I will call you or you can call me.  Always here to help and sorry if I sound like I was preeching just don't want to see anyone make the same mistakes I did. 

Tess

Steph (if you don't mind me shortening your name if you do let me know),

The average age that folks are diagnosed with RA is between the ages of 30 to 50. It is one of the most common misunderstanding that Arthritis is an old persons disease/condition. Just not so, OA is more prevelent in the elderly because of the wear and tear on the joints and weakening of the bones (osteoporosis). (PSST I can't spell).

There are folks of all ages here on Creaky some diagnosed as young as 2  years old, my case JRA at 13, RA at 18.  I went to the Creaky event in NYC a few months ago and there were folks there in their 30s and 40s just being diagnosed that week! It is a hard adjustment to take in, but with a support group like Creaky you learn from others, we all do even after 33 years I have learned new techniques and things from everyone here. 

It's that old saying you learn something new everyday!!!

We are glad your here with us and if you ever need us we'll be there for you no questions asked. (we might even give you our opinions when not asked for them, oops did I type that).

Have a great week and hope you get the insurance stuff worked out soon to help reduce this pain, because pain meds are not enough. You have to treat the other symptoms that cause the pain.  Good luck and your in my thoughts and prayers.

Hi Tess,

You can call me Steph, just don't call me late for happy hour...lol

Ok today is not  a bad pain day, so I have  a sense of humour.

Yes I am learning a lot about this disease.

I have a friend whose 16 year old son was just diagnosed with psoariactic arthritis. I can only imagine how difficult it must be for a teenager not to be able to run, play and jump.

Previously TessaD wrote:

Steph (if you don't mind me shortening your name if you do let me know),

The average age that folks are diagnosed with RA is between the ages of 30 to 50. It is one of the most common misunderstanding that Arthritis is an old persons disease/condition. Just not so, OA is more prevelent in the elderly because of the wear and tear on the joints and weakening of the bones (osteoporosis). (PSST I can't spell).

There are folks of all ages here on Creaky some diagnosed as young as 2  years old, my case JRA at 13, RA at 18.  I went to the Creaky event in NYC a few months ago and there were folks there in their 30s and 40s just being diagnosed that week! It is a hard adjustment to take in, but with a support group like Creaky you learn from others, we all do even after 33 years I have learned new techniques and things from everyone here. 

It's that old saying you learn something new everyday!!!

We are glad your here with us and if you ever need us we'll be there for you no questions asked. (we might even give you our opinions when not asked for them, oops did I type that).

Have a great week and hope you get the insurance stuff worked out soon to help reduce this pain, because pain meds are not enough. You have to treat the other symptoms that cause the pain.  Good luck and your in my thoughts and prayers.

Hi Everyone:

I have been checking in on Creaky Joints for several months but this is my first post.  All the information I have learned from all of you have been great (thank you) and this site has changed my life with RA.

I was seeing a doctor and making NO Progress.  Each day I woke up was worse.  My doctor kept telling me to be patient and made me feel like my expecation of wanting to feel better was unreasonable.  To make a long story short, I went to the Creaky Joints event in New York and was filled with hope.  To listen to people who really care and GET IT (having RA) was amazing.  That Monday I called and made an appointment with a new Rhuemy and my life was changed.  I now go to The Hospital for Special Surgery and my experience has been great (I travel almost 1.5 hours each way).  I know not everyone responds like I have so far but I want people to know there is hope!!  Follow your instincts, they are truley a gift.  Fight through the hard days and enjoy the good days.

Hi Patti!  We're glad you're here! [[hug]]

BigTed,

Sounds like you are back on track.  I'm so happy for you.

Keep us updated! *Hugs*

- Kati