What to expect at first appt. with rheumatologist?

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LulaAnne
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 9/28/2009 4:18 PM (GMT -7)   
Hello everybody - - I have posted here a few time in the last few years, but I have to admit that I mostly lurk. :-)
I posted back then looking for support and insight on some symptoms that I was having and I very much appreciated the kind responses I received.
I finally had some blood tests and today found out that my ANA test came back positive with a speckled pattern. I'm also severely anemic, but have no idea if the two things are related.
Anyway, I am supposed to be hearing from my dr. in the morning with an appointment with a rheumatologist. Could any of you tell me what to expect at the first appointment and how to best prepare? I am a little bit nervous. I am so forgetful and I tend to get tongue-tied when I'm anxious.
Thanks in advance for your help!
LuAnne

LulaAnne
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 9/29/2009 4:10 PM (GMT -7)   
Got my appointment - - Oct. 16 with a rheumatologist in Raleigh, N.C. I tried to search for any information, reviews, etc., with no luck. I am anxious to get it over with.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/29/2009 4:15 PM (GMT -7)   
Hi LuAnne,

Welcome! I'm new here too. :)

At my first appointment with a new rheumatologist (I've had 3 so far), they usually take my medical history and order blood work and/or x-rays and tell me to come back in a couple of weeks. If they suspect fibromyalgia they may do a "tender point" test (if you react to 11 out of 18, you've got fibro).

If you've already had bloodwork done by your primary care physician and the results were forwarded to the rheumatologist, he/she may want to start you on medication, depending on what they think is going on.

What I usually do for a first appointment is to collect any medical records I have copies of (especially blood tests) and make a list of all of my symptoms and questions for the doctor. I actually have a written summary of my health history and previous diagnoses, doctors, and current meds that I print out to take with me too.

All of this helps SO MUCH if I'm having brain fog and can't remember anything....because I have it all written down in black and white. I make sure to bring a small notebook so I can take notes too, otherwise I won't remember what he or she tells me!

What I look for in a doctor is someone who will listen to me, and work with me. A good rheumatologist is worth his/her weight in gold! I hope you get a great one!

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 9/29/2009 4:28 PM (GMT -7)   
Sorry! I meant "LuLaAnne"! See what brain fog can do? :)

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


LulaAnne
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 9/29/2009 4:56 PM (GMT -7)   
JoAnn,
No need to apologize! It's my fault that it's confusing. I go by LuAnne, but forgot that my screen name was "LulaAnne" (speaking of brain fog...). I didn't realize my mistake until I posted.

Thanks so much for your response. I do have copies of my blood test results. The tests were done back in May. Initially my doctor's office called and told me to take iron supplements for anemia, but that all other tests were normal. I couldn't stop thinking about those tests, so a couple of weeks ago I requested copies of the results. I was surprised to see a note on the ANA test that said "ANA+/speckled pattern. Refer to rheumatologist". Needless to say I called my doctor's office. They were very apologetic and said they didn't know how that got overlooked. (?)

Anyway, I am not having to wait long for an appointment, so I guess that's good. I will be sure to take a list of symptoms. I really do have a terrible memory lately, so I've learned to write everything down. I'm only 39 and I feel like there has to be some reason for the way I've been feeling.

Last night I tore a muscle in my calf, so I've had lots of time to spend researching online and worrying about my appointment. :-/

Thanks again for responding! :-)

LuAnne

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 9/29/2009 8:04 PM (GMT -7)   
Welcome to HW!

Check out the first topic on the forum "Lupus Resources" and there is information that tells you all about the first rheumy appt and what to prepare & what to expect from it.
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/29/2009 9:54 PM (GMT -7)   
Hi LuAnne, Welcome to the forum!

You already recieved some great advice. When I started going to the rheumy I requested
copies of every test result. I have a binder that I have divided into sections, Complete
Blood Counts, Comprehensive Metabolic Panels, Antibody Testing, Sed Rates, Dermatology,
Medical History and Medications. I also have a page with the names and phone numbers
of all my doctors, PCP, Rheumy, Hematologist, Dermatologist and Neurologist.

I make notations what date I started a med and when I stopped it. It makes things easier,
because it is so easy to forget. Always bring a list of questions with you and a list of new
symptoms you may be experiancing. I also take pictures of my rashes because sometimes
they disapear before my next appointment. I am proactive in my health care, it gives me
some feeling of control.

Wishing you the best of luck!

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


cry
Regular Member


Date Joined Jun 2006
Total Posts : 58
   Posted 10/3/2009 6:28 AM (GMT -7)   
Hi luAnne,
I am like u a lurker to , seem to come to this forum when in flare's and need help, cause everyone is great at helping you here , love this site. Just wanted to add my first appointment was about 3 hours long , they even fed me lunch after blood work , Rumey asked me where my joints hurt the most and x- rayed all of them , the rest everyone pretty much covered . Wish you well. TC
Crystal
Dx : Lupus , fibromyalgia , Meds : predasone 5mg morning and 5 at night , 400mg plaqunil a day , 400mg sulfazine a day , algeria , flexeril , vicodin , as needed .


LulaAnne
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 10/5/2009 4:58 AM (GMT -7)   
Good morning all...
I actually commented on the new posts last week, but my post got lost when the forum was down. :-(

Thanks, Lynnwood! I did look in that topic before I posted, but somehow I missed that information. I'm going to look again.

Crazykitty, thanks for the great advice about the binder, etc. I did start writing down some of my symptoms and as I was writing I realized that it all started almost 6 years ago while I was pregnant with my son. I have no idea if that's significant, just didn't realize how long it really has gone on.

Crystal, thanks for posting and mentioning how long your appointment was. I have been wondering about that. I didn't realize the physical exam would be quite so thorough until I started reading some other posts about rheumy visits.

One more note about asking for copies of test results... I originally had blood work done back in May. A nurse called me soon after and told me all of the tests were normal except that I'm very anemic. For some reason I couldn't stop thinking about those tests, so in the middle of September I asked the doctor's office to fax them to me. I was surprised to see a notation on the page with the ANA test that said "ANA+, speckled pattern. Refer to rheumatologist"!!

When I called my doctor's office the response was basically "Oooops....". They were very apologetic, though, and got me an appointment fairly quickly. I don't think my ANA was very high positive, but since I have other symptoms they wanted me to get checked out.

Sorry for the long post! :-)

LuAnne
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