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1st Rheumatologist Visit!! Suggestions or advice? #281721
10/10/18 02:26 AM
10/10/18 02:26 AM
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lazlo Offline OP
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lazlo  Offline OP
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41yo male, have had lower back pain for 25 years, never diagnosed (and still not, just thinking it may be AS based on all the research I've done on it and all the reading I've been doing on here and the similarities to my symptoms). First appointment was set for January but they had a cancellation and I'm ecstatic to be going day after tomorrow!! Woohoo!

I have prior medical records, most recent physical results, and a LOT of questions but I know I'll walk out and be sorry I missed a lot of other ones.

Anyone have suggestions on things that were very helpful to ask or that they wish they'd asked first time? And/or things to do in preparation (lists of symptoms? chronological history of progression?)? Also, any procedures or treatments I should be specifically requesting or inquiring about?

Any and all suggestions would be really great - thanks so much for any input! Everyone has been super helpful with their advice, suggestions and comments since I started on this site!!!

Re: 1st Rheumatologist Visit!! Suggestions or advice? [Re: lazlo] #281723
10/10/18 03:10 AM
10/10/18 03:10 AM
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SouthernMoss Offline
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The list of symptoms and chronology would both be helpful. Just be sure to be succinct. If you get too wordy and give lots of details, the doctor may not take the time to read it all.

Notes about when symptoms are better and when they are worse are also helpful. Again, keep your notes as succinct as possible.

If you have any family medical history that might be relevant, make notes of who and what.

Good luck with your appointment. Be sure to let us know how it goes.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: 1st Rheumatologist Visit!! Suggestions or advice? [Re: lazlo] #281725
10/10/18 04:49 AM
10/10/18 04:49 AM
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Posts: 544
Los Angeles, CA
RAHMBA Offline
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For me, I like to be clear on why I’m there.

Know family history - anyone with issues in this family of diseases such as crohns , ulcerative colitis, Uveitis, ankylosing Spondylitis, psoriasis?

If doc thinks AS is consideration, then imaging, blood tests may be ordered. Doc may Rx NSAIDS to see if that helps.


This might be of interest: https://www.spondylitis.org/This-AS-Life-Live/amber-panagos-dr-muhammad-asim-khan

Hope you find answers or at least movement towards an answer.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: 1st Rheumatologist Visit!! Suggestions or advice? [Re: lazlo] #281727
10/10/18 12:03 PM
10/10/18 12:03 PM
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Whidbey Island WA
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WhiteCell Online
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How does your illness limit your daily activities that will be important.

How do you sleep?
Is your pain worse at times where, when and what do you do (or can't do) due to pain
Do you have stomach or GI issues
Mood changes does it get you down? does it limit your social and WORK activities?


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: 1st Rheumatologist Visit!! Suggestions or advice? [Re: lazlo] #281728
10/10/18 12:53 PM
10/10/18 12:53 PM
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Toledo, OH
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MichaelSean Online
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Make sure that he or she is someone who will actually take the time to talk with you about any issues you may be having.

I'm currently in the process of switching rheumatologists because mine only tells me two things. 1) You're fine, take your Humra. 2) That's an issue for your GP.

Last edited by MichaelSean; 10/10/18 12:53 PM.
Re: 1st Rheumatologist Visit!! Suggestions or advice? [Re: lazlo] #281738
10/11/18 03:03 AM
10/11/18 03:03 AM
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lazlo Offline OP
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lazlo  Offline OP
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These are great suggestions and input - thanks very much! I will report back afterwards....fingers crossed.....


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