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View Full Version : First Appointment with Rheumatologist on Monday - any advice



sabinab
01-02-2009, 04:44 PM
Hi

I have my first appointment with a rheumatologist on Monday - does anyone have any advice or any suggestions about questions that I should ask - or what I should expect.

Happy New Year to everyone.

Sabina

mountaindreamer
01-02-2009, 07:53 PM
I have found the most confusion on which dr. to contact for which issues. I am not sure if my pcp is primary or my rheumy....I usually call my rheumy, and she then refers me to the appropriate dr. You might ask about any specialists that the rheumy feels you will need, and get their names and contact info. (these are usually drs. with experience in lupus)

My rheumy is devoted to trying to keep steroid level low enough to ward off side effects, You might ask your rheumy their typical treatment of lupus.

Each time I go to my dr., I have a list of questions most of which I found from reading the threads on this site. this is where I get most of my info.

good luck, and let us know what the dr. says.

share a smile today,

Danica01
01-03-2009, 01:17 AM
For me, a lot of the times I will get in to see the doctor and forget something, so, now I write down any questions I may have as the days go on. By the time my appointment rolls around I have a list and I take my list into the doctor and it just make the appointment run that much smoother. If I have any questions regarding new medicine or the medicine I am currently on I will actually print out articles and take them in to the appointment. Please remember one thing, you are your own advocate when it comes to your health and how you feel :!: Tell them everything :!: That is the onnly way they can help you :wink: Let us know how it went when you get done......good luck :D

sabinab
01-04-2009, 11:19 AM
Thanks - I've typed up some questions and a list of symptoms past and present to bring with me tomorrow - I'm kind of excited about seeing the rheumatologist - is that crazy? I just feel that I've been sent to see so many different specialists over the years I now feel that maybe the rheumatologist will look at all of my symptoms together rather than looking at each one in isolation.

thanks again - I'll let you know how I get on tomorrow hopefully I won't be disappointed with her.

Sabina

SassyAuburn
01-04-2009, 12:35 PM
I'm myself am agreeing with both Danica and M'Dreamer. I open up my datebook for the day of my next appointment and write down all my questions whenever they come up. Since I've only been going to my rheumie since July, he knows immediately when he sees me that he better take a seat. I ask anything and everything. KNOWLEDGE IS POWER. And you have the ultimate power over your body. If you ask a question and only get a "I don't know" or a "We'll see" answer, ask more questions...how will you know? When?

My first appointment consisted of my rheumie going over the blood tests that got me to him in the first place. He basically looked me over, medically, from head to toe. haha. Then he sent me on my way with a script for blood tests a mile long. At that appointment, it was basically a "Well, we'll see what this shows." Less than 5 days later he called with the results. They asked me a lot about family history of autoimmune disorders too. Who had what and when. Symptoms, triggers, etc. It's mainly a talking appointment with a physical I found. Now when I go, they check my previous symptoms and any new ones and answer my slew of questions.

Don't be frustrated if you leave even more in the dark than you are right now. It might not be till visit 2 or 3 till you start seeing a bigger picture.

Danica01
01-04-2009, 02:09 PM
It is very normal that you are excited to see the good ole doc :wink: This is where you hope to find answers to your questions and what is going on with your body. You are perfectly normal!!!!! I have been seeing mine for over 5 years and when I am really feeling yucky I also get very excited because they have the ability to help me feel better :) Keep the excitement and positive attitude tomorrow. Take your lists in with you and do not leave until you feel ALL your questions are answered! Good luck and keep us all updated on what they say :angel:



Thanks - I've typed up some questions and a list of symptoms past and present to bring with me tomorrow - I'm kind of excited about seeing the rheumatologist - is that crazy? I just feel that I've been sent to see so many different specialists over the years I now feel that maybe the rheumatologist will look at all of my symptoms together rather than looking at each one in isolation.

thanks again - I'll let you know how I get on tomorrow hopefully I won't be disappointed with her.

Sabina

iseedeadmonkeys
01-04-2009, 02:43 PM
Yeah id deffo go with what Dani said, always write a list down, rememeber hes working with you to keep ure immune system working properly, get to know him/her i mean not like take them for a drink lol but research on them i did with mine and hes like top rhumey in this country (SwEeT) tell them everything too, enjoy x

rob
01-04-2009, 02:46 PM
Hi Sabinab,

Welcome to our group. There's not much I can add to the excellent advice you have already been given. One of the things I always tell people with Lupus is that knowledge is power, and that knowledge can make you your own best advocate. I wrote a post a couple of weeks ago about new members here who themselves are dealing with serious, and frightening problems. I see these people turn around and help another new person with whatever info, or encouragement and support they need. This thread is a perfect example of what I was talking about.

The one thing I will add is this-always remember that those who work in the healthcare industry work for us, for you. We don't work for them. I have no doubt you will have a good rheumo who will help you put the pieces of the puzzle together. But, along the way you may also encounter healthcare professionals who are ignorant, or unaware of the facts regarding Lupus. Never be afraid of standing up to those dr's and rheumo's who might tell you that it's all in your head. You know yourself, you know your own body enough to realize that something isn't right. Trust your instincts.

You are excited about finally seeing a Rheumotologist. When I was at the point that you are at now, I felt the exact same way. To think that finally, all of my seemingly unrelated, and odd symptoms, may finally be figured out, and that I finally could get some answers and a diagnosis, gave me a huge sense of relief. I certainly didn't want Lupus, but if I did have it, I needed to know in order to move to the next step. The next step being a proper treatment plan and lifestyle changes needed to keep it in check.

Good luck tomorrow, and please let us know what you find out, and how it goes.

Rob

sabinab
01-04-2009, 02:59 PM
thanks so much to all of you - I don't know much about the rheumatologist - my primary doc just picked her from a list - fingers crossed we got lucky - I'll keep you posted - wishing you all a painfree day.

Sabina

SassyAuburn
01-04-2009, 03:35 PM
sabinab,

If after a few visits you don't feel comfortable with the rheumie you were "assigned" to... if he fluffs off your questions, isn't open with your test results, doesn't explain what the results mean, doesn't tell you about the different treatment options... you have every right to ask for another. Get a list of the ones your insurance participates with and research. You have the right.

mountaindreamer
01-05-2009, 01:04 PM
hi sabinab,

i agree with rob and sassyauburn, and all others, that you are the one in control. My first rheumy was supposedly "the best in atlanta". Well, it took me a very short while to realize that he did not take me seriously, so I did not take him seriously, and began the search for a new rheumy.

when i would call the different offices, i would explain my experience with the first rheumy. when i got compassion and respect from the receptionist, i knew i had found a new dr......and she is wonderful.

good luck, let us know.

share a smile today,

sabinab
01-05-2009, 02:12 PM
Hi well I saw the rheumy today - I thought she was a bit scary at first but she was ok really. She asked a bit about my symptoms, looked at my blood test results and glanced over the med history I prepared. She got me to strip down to my underwear, checked the movement in my joints and tested for tenderness. Funny thing is whatever way she moved my joints none felt painful except for my right hip. She put pressure on most of my joints but surprisingly none of the ones I complained about felt tender however I jumped with pain when she put pressure on the bones in my feet (which I have never complained of pain in !!!). She checked the glands in my neck, looked at my teeth and felt my tummy which was very very tender - she asked me why this was tender I said I suspected it was my diverticular disease and IBS.

She asked if I had dry eyes or dry mouth I said I had neither. However on further questioning she said that the dry persistant cough that I have at night is due to dry mouth. Anyway the upshot is that she doesn't think I have lupus but she thinks I have Sjorgens. She said the blood tests done by my primary doc were comprehensive and she just needed to do one more blood test and an xray of my hip. The note for the bloods looks like she is having my ANA and DS DNA done again - She said that the bloods will take a while - I can't make out the other test but it looks like 'TNA'. Does anyone know what this might be?

She said that the bloods will take a while - I have to come back and see her in a month in the meantime she gave me a presciption for Difene (anti- inflamatory) to help with the joint pain.
Does anyone know anything about Sjogrens? I don't think I really have the symptoms.

Sabina

SassyAuburn
01-05-2009, 03:41 PM
I know a bit about Sjorgens. My cousin on my husband's side has it and they thought I might have had that since my eyes were so dry as well as my mouth. Basically, what I learned, is it is an autoimmune disorder of the "wet" glands for lack of a more medical term. Mouth, eyes and ... well... lady-like areas get very dry. Sometimes it gets so dry it's painful. My cousin's mouth would get so dry it would crack and bleed inside. She walks with a bottle of water 24/7. It's also not unusual not to sweat with Sjorgens. Skin can be itchy and dry as well.

I was told that there is a single blood test for Sjorgens which is a high percentage indicator. When my bloods came back, I asked about Sjorgens and he showed me a piece of paper that said "Sjorgens - negative" so that was that. Although some of Sjorgens symptoms accompany Lupus symptoms as well.

Yup, the tests take long. Making the appointment to go back in a month is a good thing. Sounds like so far your rheumie is being thorough. Keep track, though, for your next apppt. if you notice any other symptoms or problems you might have.

(I also have the sore hip thing. Mine is my right. And my sore knee is my left. I look like a real party animal when I walk!)

sabinab
01-05-2009, 05:11 PM
thanks SassyAuburn
I've figured out what the blood test she ordered is - its ENA (not TNA) which is Extractable nuclear antigen which screens for SLE MCTD or Sjorgens (SS-A, SS-B, RNP, Sm etc)

Sabina

KathyW1958
01-06-2009, 06:34 AM
Hi Sabina,
Welcome to the site. My name is Kathy. I have SLE Lupus and secondary Sjogrens. If your doctor thinks that you just have Sjogrens, then it would be called Primary Sjogrens. The treatment for Sjogrens is a lot like the treatment for Lupus. You can have fatigue and joint pain with Sjogrens as well as with Lupus. They usually perscribe Plaquenil and an NSAID to treat Sjogrens. Folks with Sjogrens tend not to sweat normally and they have serious problems with their teeth and the parotid glands. For some reason there seems to be a lot of hip pain with Sjogrens too. I don't quite understand why. I hope that this helps some.

Hugs,
Kathy

sabinab
01-06-2009, 06:58 AM
Hi Cathy
Thanks - yeah I'm not sure I have the right symptoms for Sjorgens, I have fatigue, joint and muscle pain, really itchy skin, mild aneamia, diverticular disease and IBS. I have moderately positive ANa and positive ds-DNA.

On the other hand I sweat quite a lot and my teeth are pretty ok although I do get excessive plaque, have a loose tooth and my dentist says that I have really poor bone density.

I didn't think I had dry mouth or dry eyes but rheumy says my night time cough and dusty feeling at the back of my throat are dry mouth - in hindsight I have itchy eyes which I though was linked to my itchy skin but may well be dry eyes. I do have hip trouble though - I guess I'll just have to wait and see what the hip xray and new bloods reveal.

Thanks for your comment - this site is so helpful and the people are so nice.
Sabina

KathyW1958
01-06-2009, 09:43 AM
HI Sabina,
I just read your post here and it definitely does sound like you have a very mild form of the Sjogrens. I forgot to mention that with Sjogrens you could very well have intestinal problems, such as the IBS. I have serious intestinal problems. I just thought that I would add that. I hope you get some answers from your doctor very soon.

Hugs,
Kathy

sabinab
01-06-2009, 01:02 PM
Hi Kathy (sorry I spelled your name wrong in my last post.)

Thanks again for taking the time to post - I was diagnosed with diverticular disease when I was 35 - I had a colonoscopy in May last year because I'd had some rectal bleeding but thankfully the bleeding only lasted a couple of days and nothing serious was found my GI specialist said that I now had diverticuli on my diverticuli :)- he commented that I looked great and young for my age on the outside but terrible and really old on the inside!!! I told this to a friend of mine and her instant reaction was isn't that great - I had to tell her to think for a moment about what she had just said - lol :) - just shows how vain our society has become and how obsessed we are with looking young.

thanks again
Sabina

Danica01
01-07-2009, 12:16 AM
I am happy and relieved that you liked your doctor! I was thinking about you on Monday :D It is not unusual to go and see that doc and come out with even more questions :idea: You are doing the right thing by asking everyone to help you figure all of it out. Hang in there and let us know as soon as your lab work comes in. Remember, ask for a copy for your own personal records at home :wink: