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Earliest diagnosed AS? #282869 04/07/19 02:44 AM
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Miguelito Offline OP
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How long have you had AS? I was diagnosed in 1981. I am sure there are people on here who were diagnosed earlier, but 38 years is a long time ago. Frankly, I am just amazed that I was diagnosed correctly so long ago. Of course I was diagnosed so very long ago that I was then misdiagnosed 25 years ago.

I think they got it right 38 years ago because I had really good doctors and nurses (at Boston's Brigham and Women's) and because I have a very classic (and bad) presentation.

Tell me about your long ago diagnosis. I especially want to hear from people who can top 1981. I definitely carry it as a badge of honor.

Mike


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.
Re: Earliest diagnosed AS? [Re: Miguelito] #282870 04/07/19 04:15 AM
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Hi, Mike:

1978 here. I actually began having symptoms of AS just before the connection with HLA B27 was made, so it took almost 8 years for the diagnosis. And to add injury to insult, it would be another 20 years until I learned the cause of this disease. So although damaged by AS, I have had no active symptoms for almost 20 years and what I want to call full remission for perhaps 8 years.

My deformity is rather obvious and I quote my Latin teacher as my introduction to the fine AS group I just met with in India: "If You cannot be a shining example, at least be a dire warning!"

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Earliest diagnosed AS? [Re: Miguelito] #282873 04/08/19 07:13 PM
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I've talked to people that were Dx back then. May I ask approximately how old you were when Dx?

Did you join SAA at the start?

Thanks for sharing.

for me... Dx in 1989. misDx as a child 1973 and again in 1985 that led to unneeded hip surgery.


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: Earliest diagnosed AS? [Re: Miguelito] #282885 04/10/19 02:59 PM
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Miguelito Offline OP
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Eleven. No, did not join SAA when it came along a couple of years later. It was a different information age (pre-web) and I was just a teenager.


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.
Re: Earliest diagnosed AS? [Re: Miguelito] #282886 04/11/19 06:46 AM
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I sure don't beat 1981 but I first presented with sympoms in 1985 after trip to China where i got terribly sick from food poisoning. I was 29. While back pain came 1st within weeks of returning to USA, June to.... forever, it wasn't until my first case of uveitis that I was referred for HLAB27 testing by opthomologist who'd worked in Russia and was familiar with symptoms. So while I had full on flare of SI and reoccurring bilatral uveitis, , early diagnosis was reiters syndrome since "girls didn't get AS". Per doctors and quarter page writeup in medical library materials that i could find on HLAB27. Naprosyn was only rx given, which is when it was still a prescription. Reoccuring /chronic flare-ups' in eyes and SI were most common through 2010. With upper back and neck issues following. My first opthomologist trained me well to trust my eye sensations for early rx use. Likely because he got tired of me calling on weekends or holidays with a flare 4+! He'd say, " how did you miss it in Flare 1,2 or 3?" So while Im thankful for good training in eye care, sadly going to many rhuematologists over the years left me high and dry for back care. No one ever xrayed or looked further for dx. I believe it wasnt questioned because I have residual flexibility from an athletic background and while I described the pain - no one listened. Maybe I just accepted it since I'd lived with it so long. I did do a lot of chiropractic work and acupuncture between 1985-2009 - which while it didnt really make the pain go away - my recent rhuemy feels it likely did help in different ways. It was after a terrible case of uveitis that took me searching for a second opinion that connected me with a research/ university medical center in 2012. And while my eye news was good " am not going to go blind - yet?" my follow up with opthomologist in 2015 led me to asking for a referral to evaluate my back. Crazy enough, first physical assessment by Rhuemy gave him impression that pain was mechanical - not inflammatory. But we still did the xrays and blood tests which confirmed SI and pubic bone were fused. While I tried Humera, my sympoms worsened so I stopped after 6 mos. Now having more pain and having learned more about AS, I've been more open to Rx to stop progression already seen /felt in neck, lumbar, ribs, shoulders. So 33yrs after 1st HLAB27 dx, we are trying Simponi and then Mobic for inflammation. My personal effort has also included cleaning up my diet for inflammatory impact. My new Rhuemy who I started with in Dec 2018 has really validated the why behind my miserable existance for so many years. As she tells the residents' rounding with her during my office visits - pointing to my xray, "this is what we try to prevent". So much more is known in 2019 and I can only say to others', be the squeaky wheel with the doctor. Ask for MRIs early on. Or if pain for 10 yrs, an xray. Ask for second opinions. This condition changes us, if we let it win. Stay open and try as much as possible, stay active. Sadly, us early birds didnt have a chance. How can the doctors diagnose something they dont know about ? USA docs just had this diagnosis added to their manual in 2015. Too many lessons learned through this but patience and appreciation for the miracle of our body is top on my list. All we control in life is our reaction - hmmm, easier to accept on certain days.


California, USA
Reoccurring Bilateral Uveitis Dx 1985
Reiters Syndrome Dx 1985
AS Dx 2015
SI joint fused
Re: Earliest diagnosed AS? [Re: Miguelito] #282900 04/15/19 12:57 PM
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I got diagnosed in 2015 and it has been a nightmare. I would run for politics if I knew that I would be able to win and send the whole ministry of health to the gulags.

Re: Earliest diagnosed AS? [Re: Miguelito] #282938 04/24/19 01:37 PM
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I was diagnosed in 1988 after being symptomatic since late 1981, I was 27. I've been associated with the SAA since shortly after it came into being. (1990-91ish). I first came to this forum under another profile in early 2003ish.

Last edited by Ken Delano; 04/24/19 01:39 PM.

AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Re: Earliest diagnosed AS? [Re: Miguelito] #283093 05/20/19 03:28 PM
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I was diagnosed as having AS by Mayo Clinic in Minn. in 1975. I was told to quit going to the chiropractors. At the time I lived in KC and was 33 yrs old.
I started having having systems when I was 21. I went to the KC Chiefs orthopedic surgeon then because of extreme lower back pain.(My brother in law was the Chiefs treasurer and got me in to see him) He took an xray and told me I had a hairline crack in my spine. He said there was no treatment for it and It would probably quit hurting once I was 65.He asked if I had been in the service-if so, I would qualify for disability. So I started going to chiropractors trying to get some relief.I believe my back and neck were completely fused by the time I was 37.
Now I am battling Bronchiectsis which is similar to Cystic Fibrosis.
I joined SA when I went to Mayo and found out what I had.
Retired in 2002 on disability at age 59
Now age 75


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