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Jan 16th, 2023
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If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
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Joined: Apr 2015
Posts: 10
New_Member
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OP
New_Member
Joined: Apr 2015
Posts: 10 |
I haven't posted in a long time, but I've appreciated the responses I've gotten in the past, so thought I'd come back and give an update. I know there are so many that come here looking for help with getting a diagnosis, etc. and I always wonder what happened to the ones who post asking for help and never come back.
The last time I posted I was waiting on the HLA-B27 test - - I don't think I ever came back and posted my results, but they were negative. I think my rheumatologist really expected a positive result and was surprised, given my personal/family history, that it was negative. It actually seemed like she lost interest in my "case" at that point and she basically told me to try pilates as she was walking out of the exam room. I felt sort of embarrassed, like I'd wasted her time! :-/
I haven't been back to see her since then, but have gone to other doctors to deal with different individual problems that came up during the last year or so (incisional hernias, degenerative disc disease, tendonitis, ruptured tendons, shoulder impingement, severe anemia, etc.).
I was finally sent to a specialist in connective tissue disorders, who told me that it was obvious that I have a form of Ehlers-Danlos syndrome. Not that this rules out some sort of autoimmune disease, but it does explain a lot of the weird issues I've had over the years!
So I do have an answer of sorts, even if it doesn't explain everything. I'd love to know if anyone here has gotten a diagnosis of Ehlers-Danlos, though.
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Joined: May 2016
Posts: 16
New_Member
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New_Member
Joined: May 2016
Posts: 16 |
Rock on!
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Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
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Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718 |
I was finally sent to a specialist in connective tissue disorders, who told me that it was obvious that I have a form of Ehlers-Danlos syndrome. Are you taking treatment for connective tissue disorders. What treatment you are taking. What were your symptoms. Jay
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Joined: Sep 2015
Posts: 305 Likes: 2
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: Sep 2015
Posts: 305 Likes: 2 |
I have never been satisfied with a label. Neither was I satisfied without one. Either ways I felt both were wrong. But having a label gave me ammunition against the label "hypochondriac", otherwise I was just crazy.
HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
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Joined: Sep 2001
Posts: 8,397
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 8,397 |
lula-we know how you feel.
We sit there in terrible pain, x-rays within limits, blood work may be ok, etc. When we need support, we get non. But you are an intelligent person who can read, listen and make decisions to help your own well being.
Diet and exercise are my best friend.
Keep us posted.
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
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