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Saw rheumatologist. Still puzzled #280028
03/07/18 12:32 AM
03/07/18 12:32 AM
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BeaC Offline OP
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BeaC  Offline OP
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Hi again. I posted here about three weeks ago before I had my first rheumatologist appointment. I have since seen him but do not go back until April 2nd.
He was very thorough, asked a lot of questions and checked nearly every joint in my body. He also ordered more blood work, X-rays, and an MRI of my pelvis. I don’t have any results except the MRI. It shows iliopsias bursitis on the right and virtually nothing else. I still have no diagnosis, but thankfully, I am also not having much pain for the last several days.
The rheumatologist seemed puzzled because the blood work from my GP did not indicate any inflammation, although I know sometimes it doesn't. I am HLA b27 positive, for what that is worth. I think he is hesitant to diagnose me with AS since I am 65. I feel it’s possible I was misdiagnosed years ago with fibromyalgia.
Frankly, a name for whatever this is is not all that important, but I do not want to go through the excruciating thoracic and rib pain I had two weeks ago ever again. Humira was mentioned, but I won’t know any more about that until I see him again. Probably worth mentioning I also have mild scoliosis in my mid back.
Have any of you had hip bursitis with this? How long did it take to get a diagnosis of SOMETHING once you saw a rheumatologist?
Thanks for reading my novel.

Re: Saw rheumatologist. Still puzzled [Re: BeaC] #280029
03/07/18 02:44 AM
03/07/18 02:44 AM
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Posts: 1,898
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SouthernMoss Offline
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If you don't have SI joint involvement, you won't be diagnosed with AS. However, you may be diagnosed with spondyloarthritis, which is the broader category under which AS falls. As you said, the specific diagnosis is not as important as finding a treatment that works for you. Hopefully you are making progress towards that end.

I don't have hip or bursitis issues, but some of our members do.

I was fortunate that I was diagnosed quickly once I finally figured out I needed to see a rheumatologist. but it took me a long time to figure out I needed to see one. I was 52 and had been having issues since my late 20's.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Saw rheumatologist. Still puzzled [Re: BeaC] #280030
03/07/18 02:59 AM
03/07/18 02:59 AM
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BeaC Offline OP
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Yes, I was just recently reading about spondyloarthritis. I think it's a possibility. Something has to be causing all of the swelling and pain in so many joints. I am anxious to get started on some kind of treatment, although Aleve does seem to help.

Re: Saw rheumatologist. Still puzzled [Re: BeaC] #280037
03/09/18 03:37 PM
03/09/18 03:37 PM
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WhiteCell Offline
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It's a rare Rheum that just says "this is AS", Most take their time to contemplate the signs and symptoms vs. the presentation (what the patient says) in coming to a conclusive diagnosis. This is why the medications or other treatments which work and reduce your discomfort are important to take note of. To your question about how long it takes to get a dx is "longer". than most diseases. In between now and your next appointment I suggest making a note book to include:

pain level 0-10
time of day
action you took if any to reduce pain
pain level after your action 0-10

I would make notes on waking, any time pain increases and bedtime and if you wake up at night. Give this to your doctor at the appointment. It may be helpful to his understanding...and your own.


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: Saw rheumatologist. Still puzzled [Re: BeaC] #280065
03/15/18 07:53 PM
03/15/18 07:53 PM
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Posts: 46
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Miguelito Offline
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Just replying about the blood work. I am no expert, but for the last several years I have been trying to pay attention to my bloodwork, and it never seems to show any inflammation (at least to my untrained eye). And I very clearly have AS (fused SI joints, two hip replacements, Uveitis, you name it, just classic AS).


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.

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