#104732 - 03/06/08 01:04 AM
Att. of the men on forum
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janice
Registered Visitor
Registered: 10/25/05
Posts: 826
Loc: united kingdom
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Hi guys,do you think you could answer some questions for me ?.I'll try to keep them brief,but I am genuinely interested as to how you were treated when you first presented to a rhuemy with symptoms.How long before they tested for A.S.? (or other spondys)and how long before you had a firm diagnosis?.Was it ever suggested to you that it was "all in your head",did they suggest you were"depressed".Did they ever question how much pain you were in?and try to make you prove it?. Were you given the wrong diagnosis in the beginning and have found out since you have a spondy that wasn't treated? Did they ever diagnose Fibromyalgia as the primary disease? and now you have been diagnosed are they saying it is a secondary but still causing most of your pain? I have a million other questions but I don't want to bore you to death (yet).My reason for asking is this,there seems to be a pattern of women on the board that fit this scenario, but not many men. I wonder if this is the true picture or is it just that men don't discuss it as much?.I find I spend much of my time having to "fight my corner " with the rhuemy,he never say's that the symptoms or surgery I have had are down to the A.S or the Pernicious anemia,he just keeps banging on about fibro and depression  I'm not depressed!!! although I freakin should be!! hope you'll take the time to reply ,thanks,Jan. 
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#104741 - 03/06/08 04:58 AM
Re: Att. of the men on forum
[Re: janice]
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Mark D
Registered Visitor
Registered: 10/02/03
Posts: 1439
Loc: Tokyo & Texas
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My experience is probably not normal for men either, but I was lucky because my AS was diagnosed quickly when I was 18, soon after I first started showing symptoms. I went to my regular doctor with complaints of constant lower backaches, stiffness, stooped posture, and hurting badly between the shoulders whenever I sneezed. This had been developing and getting worse over a period of several months and I was starting to need Tylenol (Paracetamol) every day. My doctor immediately suspected ankylosing spondylitis, ordered some blood tests, and referred me to a rheumatologist. The rheumatologist confirmed the diagnosis after one visit. Needless to say, I had never heard of the disease and there was little information available at the time.
However, I am thankful that I found out so quickly and learned what I could, including that AS mostly affects men. I can remember for a long time wondering how it could mainly be a man's disease. It still does not make much sense to me, unless there is a genetic factor associated with the Y chromosome or perhaps some factor in women that actually moderates its development, like hormones or something. What is more of a mystery to me is how most of the victims are male, but most of the posters here are female. Not that there is anything wrong with that...
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DXed with AS 30 years ago
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#104744 - 03/06/08 06:10 AM
Re: Att. of the men on forum
[Re: Mark D]
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Spenser23
Registered Visitor
Registered: 11/28/01
Posts: 4239
Loc: New York, NY, USA
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The very first doctor I went to for my back problems give me the old, "It's all in your head" routine. I was so infuriated, I refused to go back to another doctor. I just didn't want to waste my money being told what I either already knew (my neck was stiff, so I must have some arthritis in it), or that I was imagining everything. (Being young, it never occurred to me that this doctor might have been an isolated case of idiocy.)
Fortunately, after nearly five years of such stubborness, my mother insisted on dragging me to a good rheumatologist, who diagnosed me within minutes, and who told me I was a 'textbook case' of someone with AS.
Spenser23
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#104745 - 03/06/08 06:16 AM
Re: Att. of the men on forum
[Re: Mark D]
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cma 1970
Registered Visitor
Registered: 08/16/07
Posts: 176
Loc: no. california
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INTERESTING THOUGHT!!!Remember when reading about this disease it usually affects men, but you are right about the women. Then I thought ok, it's all right to complain, it is proven on film thats what I have although B27 -0-. Craziness, maybe we (I) complain more....especially when I was directed to this board by a friend I no longer felt ALONE, only diagnosed with this for a year now but have had "back" probs all my life 55+. Docs said I never should have walked occult spinabifida too.
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#104939 - 03/06/08 09:16 PM
Re: Att. of the men on forum
[Re: cma 1970]
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rickster
First time visitor
Registered: 03/06/08
Posts: 1
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My diagnosis with A.S. came from ortho. surgen took a boan scan then blood test it took two weeks. I have had A.S.17 years and crohans for12 years. The best advice I could give is to stay active workout at gym strech take yoga swim.I sware by it Iam a contracter and still like to work in field at 50 years old.Take paine meds and indomethacin as needed for A.S. and prednizone for crohnes.I am off all meds now will see how long it lasts.
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#104940 - 03/06/08 11:03 PM
Re: Att. of the men on forum
[Re: rickster]
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ricobrognafan
Registered Visitor
Registered: 07/19/07
Posts: 92
Loc: Indianapolis
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When I was 23 they found nothing and did nothing. Because of screwed insurance, I fought a bunch of medical bills for a long time after that.
Ten years later, my family doc did some inflamation tests that turned out wicked high.
Because of poking around and finding this site, I suggested AS. He was open-minded, did some x-rays, and thought I might be onto something. Sent me to the rheumy, and it was all easy from there -- except for the ten years of crap in-between...
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#104945 - 03/06/08 11:27 PM
Re: Att. of the men on forum
[Re: rickster]
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toby
Registered Visitor
Registered: 04/07/06
Posts: 557
Loc: WA
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Oh my, fantastic question and thanks for taking an interest in our side of the issue.
I had complained to my primary doctor about back pain since my early thirties. That's the same time that my work began to be more of a physical nature, so it was assumed that the back pain was from strain and overwork. I quit work and starting going to the gym to get stronger as I looked for a different line of work. I succeeded, only my new job ended up being very physical as well. Because I had improved through weightlifting, I lasted about four years before I starting having back, hip, and shoulder pain.
Still, it was assumed that I was just overworked and the pain was from strain, wear and tear. I was given physical therapy at first. Later, I was tried on a series of various NSAIDS, none of which did very much to improve my condition. I slowly got worse, until one day a neighbor commented that I must be hurting from the way I was moving. That was the last straw. If others could see I was suffering, it was time the damn doctors started taking this seriously.
Because I hadn't been taken seriously and was deteriorating, I had become depressed. Then it was assumed that depression was the cause of the pain and I went to a psychiatrist, who rx'ed various SSRI's and other psych meds...anti-psychotics, tricyclics, etc. I went also to a psychologist for talk therapy. I tried various alternative treatments that resulted in worsening migraines,which had previously been more sporadic and less severe. Ultimately I developed a status migraine, a migraine that never went away completely.
Finally, my primary care doctor ordered blood work. It came back showing a high rheumatoid level and I was told that I had rheumatoid arthritis and referred to a rheumatologist. Subsequent blood work also revealed hypothyroidism. When I finally did see a rheumatologist, he was quick to dx AS after rom tests and an HLA-B27 positive result. Still, my erroneous psych dx and resulting records haunt me. My primary care physician, even at my last office visit, asked if I wanted a referral to a psychologist and took it upon himself to generate a referral to a medical psychologist, whose office also performs biofeedback therapy. I had been there for two previous visits, having been referred there by a collaborative effort of my insurance company and my psychologist. I will not go there again. They did absolutely nothing for me, and now that I am feeling better on Remicade, my mental outlook has changed drastically. I no longer even feel a need to talk to a psych professional about my medical problems and the life difficulties they create. I'm doing just fine now.
Nevertheless, I'm sure the "it's all in you head" theory will follow me for the rest of my life. Once something is in your records, it's impossible to get it completely expunged.
Ladies, you're not alone in being wrongly accused and not taken seriously. Hell, I still have a family member, my wife, and many co-workers who think I'm exaggerating the whole thing, or outright lying about my condition. It's the nature of having an invisible disease that few have heard of.
toby
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I remember when we used to sit in a government yard in Trenchtown...
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#104996 - 03/07/08 09:06 AM
Re: Att. of the men on forum
[Re: toby]
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justice
Registered Visitor
Registered: 02/09/08
Posts: 236
Loc: Houston, Texas
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Toby, I can relate to your story. Its amazing how these doctors never consider that the pain is whats causing our depression, not depression causing our pain.
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Jill
37, mom of three
Houston, TX
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#104999 - 03/07/08 10:50 AM
Re: Att. of the men on forum
[Re: janice]
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Tacitus
Registered Visitor
Registered: 06/06/03
Posts: 2099
Loc: Palm Springs area, California
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Hi, Jan:
How long before they tested for A.S.?
When I first developed symptoms, the HLA B27 relationship to AS was unknown. The GP who finally diagnosed me stated that my original doctor had "suspected" AS, but I did not respond to the butazoldin at that time (probably did not give it enough of a chance).
How long before they tested for A.S.? (or other spondys)and how long before you had a firm diagnosis?
Eight years to both questions. Probably partly my fault, since I found relief from symptoms by fasting, and did not seek medical care for many years--until symptoms returned after eating a provocative food.
Was it ever suggested to you that it was "all in your head",did they suggest you were"depressed".Did they ever question how much pain you were in?and try to make you prove it?. Were you given the wrong diagnosis in the beginning and have found out since you have a spondy that wasn't treated? Did they ever diagnose Fibromyalgia as the primary disease? and now you have been diagnosed are they saying it is a secondary but still causing most of your pain?
No to all of this, but I am aware that, historically, AS has been characterized as "a man's disease." I regret that our sister sufferers are treated so shabbily by the medical profession, but the early course of AS in men is very different than in women and there is a more definitive pattern for males. NOBODY understands the pain except fellow spondys, but the very few doctors who even tried to suggest that I was exaggerating the pain or any symptom lost my business immediately. We vote with our feet and when the doctors did not (and they still DO NOT) have the right answers, I sought and found alternatives and now regret ever giving in to the medical establishment--almost everyone with AS would do much better without doctors, at least in the early stages--fortunately there are some doctors who can fix the mess that other doctors create!
John
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Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAAProfessor Alan Ebringer on Diet and ASRed Arrow --> PhilippinesHodie mihi cras tibi. DO IT (diet) or be done to.
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#105035 - 03/07/08 06:36 PM
Re: Att. of the men on forum
[Re: Tacitus]
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Jonathon
Registered Visitor
Registered: 07/07/06
Posts: 16853
Loc: California
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Hi Janice,
I went thru quite alot back in 2005 before I finally got diagnosed with AS. I had no idea what I had when I woke up one morning in April to really bad pain in my hips and thighs..it happened that fast...overnite..the pain kept getting worse& worse day by day to the point of being severe, finally one morning after about a week it was so bad I went to the ER to try to find out what was going on. Long story short, I've had symptoms of AS since late teens early 20's but the symptoms I had back then were never diagnosed properly, and were nothing quite like the full onset, which did a big number on me..spread everywhere etc. I was always told I had something else that was always completely unrelated to AS...in other words..they had no clu what was wrong then. It took a couple of trips to 2 different Er's in April 2005 to finally be told I should try going to a rheumatologist. After going thru alot of time & hassle, I finally got a referral to an excellent rheumatologist who was sure, after taking several tests, that I had AS. I followed up with another rheumatologist for a second opinion and was told I have PsA on my first and only visit. I chose to stay with my original rheumy and he has helped me alot. I was lucky,(so to speak) I was never told I was depressed or had fibro..my pain was never questioned...so it was pretty much a one visit confirmation as to what the problem was in my case, and then when the tests came back it was confirmed. They both told me I had classic symptoms. Altho I don't have psoriasis, so the PsA diagnosis doesn't seem to quite fit..not sure why the second rheumy differed in opinion and nothing has surfaced that is indicative of psoriasis since then, so I believe the AS diagnosis is accurate. The treatment is the same for either one, so going with either rheumy's diagnosis would have been ok.
Best Wishes,
Jonathon
Edited by Jonathon (03/07/08 06:52 PM)
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