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Joined: Aug 2010
Posts: 39
Member
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OP
Member
Joined: Aug 2010
Posts: 39 |
At the age of 20 i had been working 2 full time jobs. I spent all my time running from grill to freezer and apperntly this caused compression and expansion in my bones piching my nervous system causing me to pass out. That is what the orthopedic doctor explained to me was happening and it was being caused by a condition known as A.S. I tested hlb a27 positive and in the past 18 years have been diagnosed by 2 other doctors. That is until today all my x-rays looked good she said except for my neck. She said you have arthritis there and a narrowing of the nervous path, But i believe you have fibromylagia. I know fibro and A.S can be misdiagnosed. I have all clasic symptoms of A.S. Lower back and hip pain and stiffness, rib pain, sternum cracks, the clasic posture issue. Blah Blah Blah... So now she wants me to see a spine specialist. I honestly belive he wll come back with A.S. Just need to vent some its frustrating. My wifes ready to pull her hair out. Sometimes it just doesn't seem worth it to go to the doctor its just a vicious cycle of the run around.
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
sorry to hear of the vicious cycle, been there myself, so can relate.  so much useless energy wasted in the process. i've often felt like a human ping pong ball; one doctor says this, the other says the opposite.....but now i think i finally have a team all on the same page. its nice to no longer be working to build a case to prove inflammatory arthritis, to finally have doctors working to lower the inflammation instead, seems like a much better use of time and energy. but i hear too many people talk about having to change doctors and all that effort to get to the right place seeming to be for naught. hope the spine specialist helps you. 
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Joined: Jan 2009
Posts: 4,501 Likes: 1
Supreme_AS_Kicker
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Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501 Likes: 1 |
So 3 of 4 docs say AS? (not sure I counted right  ) Hopefully, the spine doc will make the correct determination. Ultimately, isn't the goal a correct diagnosis? Frustrating, definitely. while you wait for your appt.
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Joined: Oct 2010
Posts: 558
Sergeant_AS_Kicker
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Sergeant_AS_Kicker
Joined: Oct 2010
Posts: 558 |
Am I reading this right that for almost half your life you thought you had (because you were diagnosed with) one disease and now you are being told it isn't right?
If I am reading that right I can't imagine what you are going through right now!
Geez. I'm really sorry to hear this.
~ Holly
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Joined: Jun 2006
Posts: 1,873
Lieutenant_AS_Kicker
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Lieutenant_AS_Kicker
Joined: Jun 2006
Posts: 1,873 |
Oh honey I understand. I'm so sorry you're getting the runaround, and believe me, EACH of us has been to the point of never wanting to see another doctor again. It's like a cycle. For a couple of years, you get to where you just can't stand them.
I've never heard of Fibro causing people to pass out between grill and freezer . . . ? i'll have to look into that a bit more.
Just wanted to let you know we all understand! Hugs.
Bridget
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Joined: Sep 2001
Posts: 6,179 Likes: 23
AS Czar
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AS Czar
Joined: Sep 2001
Posts: 6,179 Likes: 23 |
bagobones-- i believe you have fibromylagia. HA HA HA HA HA!! I needed a good laugh today... Sorry. How many box tops did she send in to get that "Doctor" designation? i believe you have fibromylagia. I LOVE it! Classic. Hope You are not seriously considering ANYTHING this Crackerjack box MD has to offer. RUN (or hobble, crawl, etc) away from this fraud; save Yourself. They can bury their mistakes, don't become one of them! HEALTH, John
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Joined: Jun 2009
Posts: 205
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Jun 2009
Posts: 205 |
At the age of 20 i had been working 2 full time jobs. I spent all my time running from grill to freezer and apperntly this caused compression and expansion in my bones piching my nervous system causing me to pass out. That is what the orthopedic doctor explained to me was happening and it was being caused by a condition known as A.S. I tested hlb a27 positive and in the past 18 years have been diagnosed by 2 other doctors. That is until today all my x-rays looked good she said except for my neck. She said you have arthritis there and a narrowing of the nervous path, But i believe you have fibromylagia. I know fibro and A.S can be misdiagnosed. I have all clasic symptoms of A.S. Lower back and hip pain and stiffness, rib pain, sternum cracks, the clasic posture issue. Blah Blah Blah... So now she wants me to see a spine specialist. I honestly belive he wll come back with A.S. Just need to vent some its frustrating. My wifes ready to pull her hair out. Sometimes it just doesn't seem worth it to go to the doctor its just a vicious cycle of the run around. If she does suspect an inflammatory condition, why has she not referred you to a rheumatologist? Orthopedic doctors should not be treating you for a something that another doctor is better trained to deal with. Get yourself to a rheumy quick! Why were you tested twice for HLA-B27? This is a genetic test. Did they think you would magically be negative in a few years? As far as x-rays are concerned, you need to have the rheumy look at them because not even radiologists are adequately trained to read x-rays for signs of AS. Radiologists are trained very well for trauma and other things I am told, but things like arthritis it is literally a footnote in their studies. My rheumy only really trusts one guy at Cedar-Sinai hospital in Los Angeles to give him accurate readings for his patients. Take charge of you medical care and yes you will have to learn on the fly but YOU are your best advocate for your health.
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Joined: Aug 2010
Posts: 39
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OP
Member
Joined: Aug 2010
Posts: 39 |
yes it's 3 of 4 now that confirm A.S. One of them being a rheumy at university of michigan named Dr. Holoshitz (that is a real name not tring to be funny). Yes it is agrivating and yes i take the most recent rheumy diagnosis with a grain of salt. she made this diagnosis based on 2 10 min visits and x-rays. She is a long way from being able to make a well informed decision in my eye's. The one thing that is making me keep my sanity about this is all the flare ups i've had over the years. They don't lie. So we will see where this goes. Thank you all for your support.
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Joined: May 2010
Posts: 25
Member
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Member
Joined: May 2010
Posts: 25 |
I can see how frustrated you are. You know what you have and what your dealing with, just remember that. Keep your head up. I gotta say I love the name of the Dr. you were seeing. Dr Holoshitz, that should bring a smile to your face everytime you think of it.
Working twice as hard to work half as fast since 2002.
AS, HLA-B27 positive, Vitamin D challenged, and many fun surprises along the way!
JP
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Joined: Jan 2006
Posts: 3,016
Imperial_AS_Kicker
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Imperial_AS_Kicker
Joined: Jan 2006
Posts: 3,016 |
I second John's thoughts. By the way, orthopedics are surgeons and aren't educated to any extent about AS, and usually send their patients to a Rheumy for diagnosis when they suspect something. So you're heading in the wrong direction.
Cindy
" That which does not kill me only makes me stronger"
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