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Hello I'm new to the group #282138
11/26/18 09:21 PM
11/26/18 09:21 PM
Joined: Nov 2018
Posts: 6
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J
Jg19446 Offline OP
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Jg19446  Offline OP
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J

Joined: Nov 2018
Posts: 6
PA
Hello,
I don't have an official AS dx yet, but it seems to match my symptoms best. I first went to the rheumatologist in 2015 for fatigue and joint pain. This year I went back because things have gotten significantly worse. I have sever back pain especially from about 2am-10am. I often sleep sitting up in a chair and need a hot shower to get moving in the morning. I also have joint pain in my hips, knees, ankels and shoulder. I've also had inflammatory eye issues in the past which was eventually dx'ed as blepharitis. In addition to the issues I have narcolepsy, epilepsy, hearing loss, vision deterioration, Raynaud's, diabetes type 2. I'm also a recovering addict. I'm on piroxicam (feldene), flexirl, norflex, and cymbalta. Finally starting to feel well enough to do some things around the house
A month ago it took all of my energy to get out of a chair and walk across the room. I'm 28. The rheumatologist has diagnosed as undifferentiated connective tissue disorder for now although he doesn't like that term. He has referred me to a geneticist and physical therapy which I start next week.


JG xx
Re: Hello I'm new to the group [Re: Jg19446] #282141
11/26/18 10:30 PM
11/26/18 10:30 PM
Joined: Aug 2017
Posts: 83
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kglenn Online
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kglenn  Online
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Joined: Aug 2017
Posts: 83
Welcome to the group, JG! It sounds like you are dealing with a lot. I hope you are able to get the answers and help that you need--it sounds like you are on the right track.

I am new to spondylitis as well (about a year since diagnosis) and my symptoms are quite mild so far.

All the Best!


Karen
Female, early 50's, HLA B27+, family history of SpA
Diagnoses: USpA (9/17), limited Scleroderma/Raynaud's phenomenon/Sjogren's syndrome (1/16), stroke (8/15), Factor V Leiden (8/15)
AS symptoms: right heel enthesitis/tendonitis; elbow tendonitis; mild low back/buttocks and hip pain/stiffness; normal MRI
Treatment: Cosentyx; Xarelto; vitamins D3, B12, folate
Primary non-responder to Enbrel
Re: Hello I'm new to the group [Re: kglenn] #282142
11/26/18 11:46 PM
11/26/18 11:46 PM
Joined: Nov 2018
Posts: 6
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Jg19446 Offline OP
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Jg19446  Offline OP
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J

Joined: Nov 2018
Posts: 6
PA
Thank you! What lead to your dx


JG xx
Re: Hello I'm new to the group [Re: Jg19446] #282149
11/27/18 03:03 AM
11/27/18 03:03 AM
Joined: May 2010
Posts: 1,447
Whidbey Island WA
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WhiteCell Offline
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WhiteCell  Offline
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Joined: May 2010
Posts: 1,447
Whidbey Island WA
Ask to see a cardiologist and get a 2nd opinion from a Rheumatologist. My two cents.


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: Hello I'm new to the group [Re: Jg19446] #282151
11/27/18 04:15 PM
11/27/18 04:15 PM
Joined: Jun 2016
Posts: 435
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Winston Offline
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Winston  Offline
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Joined: Jun 2016
Posts: 435
Gosh, you do have a lot going on. I feel for you and also second WhiteCell's recommendations that you seek a second opinion from another rheumatologist (preferably one affiliated with a research center given the complexity of your circumstances) and ask for a referral to a cardiologist. Anybody diagnosed with a connective tissue disorder should see a cardiologist for a cardiovascular workup.


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