Question:
Hi Tim:))) Bruce on. Ca. retired 20yr. medvac sas paramed , did another 15 on civy st. till auto thyroid jumped me here with all these fair maids and a few token guys!!! J "even being blonde " gave you great words to ponder as will many others. They are all good hearts and the odd red head with spit & fire will lull you with motherly words of wisdom . If you are coming to 20 remember what is the first casualty in war! Have a full workup done outside ! Do hope you become another token guy as we are wwwwwwwway out numbered. "J" <jwoot…@execulink.com> wrote in message
news:3CBB2841.410D1F92@execulink.com… – Hide quoted text — Show quoted text -> Welcome Tim, > Glad you’ve been reading and I hope you’ve checked out KCat’s links and Andy’s. > My brother has symptoms similar to you and gosh can he sleep, even tho the apnea > now seems under control with a new mask. > He’d like to sleep 10 – 12 hours a day, if he could. Says it’s been that way > even back to his teens, so perhaps he’s had Lupus for longer than we think? I > do remember him getting "rosacea" when he was a teen but we never thought much > about it, because we all blondes (but not necessarily dumb LOL) > Anyhow his ANA was 1:640 for many years and was ignored and has been 1:1280 for > 4-6 years and still was ignored. > Keeps getting told he’s on some wait list to see a rheumy. AFAIK all other > possibles for high ANA have been ruled out in his case. He’s older than you, > younger by me by 2 years and I keep bugging him to at least get a urinalysis to > monitor his kidneys coz he often complains (amongst others) about kidney /flank > pain. So since he doesn’t have ‘puter himself, I’m here, "educating" myself and > when he calls me I pass along info that he might require and try to be > supportive ("read"..nag) > Here’s some labwork urls (and/or differentials) because there’s more to a > diagnose of Lupus than just the ANA. > http://www.mtio.com/lupus/lfalt1.htm > http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs15.htm > http://www.lupus.org/education/brochures/labtests.html > http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs11.htm (Lupus in men) > You should be scared, this is the scariest/funniest/bestest newsgroup I’ve ever > seen. <g> > And I bet you and John might have a lot in common…John in Utopia, Ont. > I love motorcycles, used to ride with hubby on BSA (no brakes/lights), then we > got serious and had a Triumph 650. > I used to fall asleep on the back of that one. > The other scarey thing, when I read your post, is that you might/could be > retired and/or lose your benefits if you get a dx of Lupus?? Can you see a > rheumy privately? > Otherwise, others will tell you here that some Lupus is mild and other is more > severe, affecting the organs. > So we’ll just hope for now that you have the mild type. 
> Stick around, BJ will have lots of questions for you. She keeps notes LOL..just > kidding, but man that woman has the greatest memory I’ve ever seen ! > Later, and please stick around, we have some who show up here and then they > disappear and then we wonder what happened. (or I do). > Ask any questions, someone will know the answer or tell you their experiences. > J – that’s my advice. > Tim wrote: > > Hi, > > Been lurking here for about two weeks and thought I’d introduce myself. I’m > > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > > motorcycles and (lately a lot) sleeping.<g>. > > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > > finally told me something new–story sorta’ goes like this: > > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > > and joint pain for several years. I almost hate to say that the really bad > > bone and joint pain started post-anthrax vaccine, but it did. Also there > > are several other things I never tied together as well such as a 96.2 body > > temp, unexplained exhaustion with high fever written off as "viral febrile > > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > > getting ready to get out and I demanded some real answers. > > Don’t know if any of you have had the pleasure of dealing with military > > medicine, so let me briefly explain. Seemingly, the whole point is to look > > at you, ask some questions, provide some canned philosohy on how to be > > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > > to get the troop back to work. From my perspective it was usually easier to > > just deal with any pain rather than the bureaucracy. > > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > > and shoulders xrayed. A while later, I get a call from the medical hobby > > shop stating that everything is normal with no sign of arthritis, ‘…try to > > exercise more and take motrin for the pain." I know something is wrong, but > > how do I get them to look deep enough? As luck would have it, I had made > > the young Lt mad and he also sent me off to the lab to give about a quart of > > blood after the xrays. This is where my being here comes in. > > Got a call from a different Doc stating I needed to come in for a followup > > ASAP. I get in there and go through the ususal 20 questions about how I > > feel. At this point he asks me if I know why I am there–I rally don’t know > > as I was told I was OK, yet again. Getting-too-long-story short, he says I > > have an elevated ANA count. Then he explains waht that means and tells me to > > wait a month to do the test again. > > He also told me not to read the internet ’cause it would scare me. Well I > > did and I’m here–should I be scared? He did caveat the whole thing by > > saying it was possibly nothing, but his manner was so strikingly different > > than I have ever been exposed to in a military hospital that I doubt he was > > really straight with me. He was just too forthcoming in offering to treat > > my aches and pains–difficult to convey this in words. > > So, assuming I go back and the ANA test remains positive, I would appreciate > > some advice on what else I should try to prod them into doing to narrow it > > all down to a diagnosis. Heck, I’d just appreciate some advice. > > Tim
Response:
In article <3CBB4CF5.97BEE…@execulink.com>, J <jwoot…@execulink.com> wrote [] >Somewhere there’s a pretty comprehensive list of other possibles for elevated >ANA which I’m assuming your doctor(s) will test for to rulle in/out. But I’ve >lost it. Not sure if it’s in Dr. Wallace’s book or not.
<URL:http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs15.htm> says ANA stands for anti-nuclear antibody. This test detects a group of antibodies directed against components of nucleus of the cell, such as DNA and ribonucleoproteins (RNP). The individual antibodies include anti-DNA antibodies and the various anti-ENA antibodies (see below). The ANA test is used as a screening test for these autoantibodies which may then be identified individually by other tests. The ANA test is positive in 95% of people with lupus but only about 5% of healthy people. It can also be positive in people with related autoimmune conditions (sometimes called connective tissue diseases) such as dermatomyositis, polymyositis, and systemic sclerosis (scleroderma). It is sometimes positive in people with other types of disease such as chronic infection or certain malignancies (cancers). It is therefore not diagnostic of lupus, but it is important supporting evidence when other features (symptoms, signs and other laboratory tests) suggest lupus. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>
Response:
make that a double watch it buster I resemble that remark! The Red head, part. Wende "J Rogow" <JRo…@ridgenet.net> wrote in message
news:a9fud60tbi@enews2.newsguy.com… – Hide quoted text — Show quoted text -> "rothnie" <31019558…@rogers.com> wrote in message > news:zDKu8.5807$SK1.2539@news01.bloor.is.net.cable.rogers.com… > > Hi Tim:))) Bruce on. Ca. retired 20yr. medvac sas paramed , did > another 15 > > on civy st. till auto thyroid jumped me here with all these fair maids > and a > > few token guys!!! > > J "even being blonde " gave you great words to ponder as will many > others. > > They are all good hearts and the odd red head with spit & fire will > lull you > > with motherly words of wisdom . > Watch it buster – I *resemble* that remark! > > If you are coming to 20 remember what is the first casualty in war! > Have a > > full workup done outside ! Do hope you become another token guy as we > are > > wwwwwwwway out numbered. > Yes, Tim, please stay around. > Judith, red-headed spitfire/pistol packin’ momma
Response:
In article <a9f7l002…@enews1.newsguy.com>, J Rogow <JRo…@ridgenet.net> wrote >Tim, welcome, and you *have* come to the right place. >Possibly, Andy, John, or Wes (resident male Lupies)
Disclaimer – I don’t have Lupus; I’m married to it >will have better >information
See <URL:http://www.kitzbuhel.demon.co.uk/lupus> for oodles of it! — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>
Response:
Hi Bruce, Do you think that being a token guy is all that bad? We love our men dearly. I loved you enough to send our good Saskatchewan weather your way. I hope you are enjoying it. BJ-in windy, but mild Sk. "rothnie" <31019558…@rogers.com> wrote in message
news:zDKu8.5807$SK1.2539@news01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Hi Tim:))) Bruce on. Ca. retired 20yr. medvac sas paramed , did another 15 > on civy st. till auto thyroid jumped me here with all these fair maids and a > few token guys!!! > J "even being blonde " gave you great words to ponder as will many others. > They are all good hearts and the odd red head with spit & fire will lull you > with motherly words of wisdom . > If you are coming to 20 remember what is the first casualty in war! Have a > full workup done outside ! Do hope you become another token guy as we are > wwwwwwwway out numbered. > "J" <jwoot…@execulink.com> wrote in message > news:3CBB2841.410D1F92@execulink.com… > > Welcome Tim, > > Glad you’ve been reading and I hope you’ve checked out KCat’s links and > Andy’s. > > My brother has symptoms similar to you and gosh can he sleep, even tho the > apnea > > now seems under control with a new mask. > > He’d like to sleep 10 – 12 hours a day, if he could. Says it’s been that > way > > even back to his teens, so perhaps he’s had Lupus for longer than we > think? I > > do remember him getting "rosacea" when he was a teen but we never thought > much > > about it, because we all blondes (but not necessarily dumb LOL) > > Anyhow his ANA was 1:640 for many years and was ignored and has been > 1:1280 for > > 4-6 years and still was ignored. > > Keeps getting told he’s on some wait list to see a rheumy. AFAIK all > other > > possibles for high ANA have been ruled out in his case. He’s older than > you, > > younger by me by 2 years and I keep bugging him to at least get a > urinalysis to > > monitor his kidneys coz he often complains (amongst others) about kidney > /flank > > pain. So since he doesn’t have ‘puter himself, I’m here, "educating" > myself and > > when he calls me I pass along info that he might require and try to be > > supportive ("read"..nag) > > Here’s some labwork urls (and/or differentials) because there’s more to a > > diagnose of Lupus than just the ANA. > > http://www.mtio.com/lupus/lfalt1.htm > > http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs15.htm > > http://www.lupus.org/education/brochures/labtests.html > > http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs11.htm (Lupus in men) > > You should be scared, this is the scariest/funniest/bestest newsgroup I’ve > ever > > seen. <g> > > And I bet you and John might have a lot in common…John in Utopia, Ont. > > I love motorcycles, used to ride with hubby on BSA (no brakes/lights), > then we > > got serious and had a Triumph 650. > > I used to fall asleep on the back of that one. > > The other scarey thing, when I read your post, is that you might/could be > > retired and/or lose your benefits if you get a dx of Lupus?? Can you see > a > > rheumy privately? > > Otherwise, others will tell you here that some Lupus is mild and other is > more > > severe, affecting the organs. > > So we’ll just hope for now that you have the mild type. > > Stick around, BJ will have lots of questions for you. She keeps notes > LOL..just > > kidding, but man that woman has the greatest memory I’ve ever seen ! > > Later, and please stick around, we have some who show up here and then > they > > disappear and then we wonder what happened. (or I do). > > Ask any questions, someone will know the answer or tell you their > experiences. > > J – that’s my advice. > > Tim wrote: > > > Hi, > > > Been lurking here for about two weeks and thought I’d introduce myself. > I’m > > > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > > > motorcycles and (lately a lot) sleeping.<g>. > > > Well, after years of being fed Motrin and ignored, two weeks ago a USAF > Doc > > > finally told me something new–story sorta’ goes like this: > > > Been having a lot of, to me abnormal for 38yo otherwise healthy male, > aches > > > and joint pain for several years. I almost hate to say that the really > bad > > > bone and joint pain started post-anthrax vaccine, but it did. Also > there > > > are several other things I never tied together as well such as a 96.2 > body > > > temp, unexplained exhaustion with high fever written off as "viral > febrile > > > illness", facial skin rashes dismissed as rosacia, alleged gout with > normal > > > uric acid, etc, etc, etc. However, after 19 years of the brush off, I > am > > > getting ready to get out and I demanded some real answers. > > > Don’t know if any of you have had the pleasure of dealing with military > > > medicine, so let me briefly explain. Seemingly, the whole point is to > look > > > at you, ask some questions, provide some canned philosohy on how to be > > > "healthy", and prescribe motrin, naprocyn, or various other innocuous > pills > > > to get the troop back to work. From my perspective it was usually > easier to > > > just deal with any pain rather than the bureaucracy. > > > So anyway, after whining long enough I get my ankles, knees, hands, > elbows, > > > and shoulders xrayed. A while later, I get a call from the medical > hobby > > > shop stating that everything is normal with no sign of arthritis, > ‘…try to > > > exercise more and take motrin for the pain." I know something is wrong, > but > > > how do I get them to look deep enough? As luck would have it, I had > made > > > the young Lt mad and he also sent me off to the lab to give about a > quart of > > > blood after the xrays. This is where my being here comes in. > > > Got a call from a different Doc stating I needed to come in for a > followup > > > ASAP. I get in there and go through the ususal 20 questions about how I > > > feel. At this point he asks me if I know why I am there–I rally don’t > know > > > as I was told I was OK, yet again. Getting-too-long-story short, he > says I > > > have an elevated ANA count. Then he explains waht that means and tells > me to > > > wait a month to do the test again. > > > He also told me not to read the internet ’cause it would scare me. Well > I > > > did and I’m here–should I be scared? He did caveat the whole thing by > > > saying it was possibly nothing, but his manner was so strikingly > different > > > than I have ever been exposed to in a military hospital that I doubt he > was > > > really straight with me. He was just too forthcoming in offering to > treat > > > my aches and pains–difficult to convey this in words. > > > So, assuming I go back and the ANA test remains positive, I would > appreciate > > > some advice on what else I should try to prod them into doing to narrow > it > > > all down to a diagnosis. Heck, I’d just appreciate some advice. > > > Tim
Response:
"rothnie" <31019558…@rogers.com> wrote in message
news:zDKu8.5807$SK1.2539@news01.bloor.is.net.cable.rogers.com… > Hi Tim:))) Bruce on. Ca. retired 20yr. medvac sas paramed , did another 15 > on civy st. till auto thyroid jumped me here with all these fair maids and a > few token guys!!! > J "even being blonde " gave you great words to ponder as will many others. > They are all good hearts and the odd red head with spit & fire will lull you > with motherly words of wisdom .
Watch it buster – I *resemble* that remark! > If you are coming to 20 remember what is the first casualty in war! Have a > full workup done outside ! Do hope you become another token guy as we are > wwwwwwwway out numbered.
Yes, Tim, please stay around. Judith, red-headed spitfire/pistol packin’ momma
Response:
Paula: Do you have an idea why they are asking for information that would link Vietnam and Desert Storm Vets to Lupus? Or do you know someone I could contact to find out more information? Thanks, Sonja – Hide quoted text — Show quoted text -Paula Love <paulalo…@comcast.net> wrote in message <news:B8E0BC69.6226%paulalove3@comcast.net>… > > Getting-too-long-story short, he says I have an elevated ANA count. Then he > > explains waht that means and tells me to wait a month to do the test again. > The wait and see aproach, well, SUCKS!! I cant remember what else you should > do but one thing sticks out to me, the military. The local VA here is asking > for anyone that was at desert storm or Viet Nam that have lupus like > symptoms or were diagnosed with lupus OR their family diagnosed with lupus > they want to talk to you ASAP. My grandfather and uncles were all there so I > been trying to beat down their door for more info. But since my dad told the > army to p*ss off they aint too cool talking to me (trust me its a LONG story > with a valid reason) > My advice, sit on the stupid doc till they do something. Even if its not > lupus its something and its probably treatable beyond what they are doing. > Keep us posted and good luck! > Paula from AL
Response:
i was told to go to your local VA they would know more, ill look it up again. – Hide quoted text — Show quoted text -> From: rob-so…@mindspring.com (sbrannon) > Organization: http://groups.google.com/ > Newsgroups: alt.support.lupus > Date: 15 Apr 2002 19:32:17 -0700 > Subject: Re: Greetings > Paula: > Do you have an idea why they are asking for information that would > link Vietnam and Desert Storm Vets to Lupus? Or do you know someone I > could contact to find > out more information? > Thanks, > Sonja > Paula Love <paulalo…@comcast.net> wrote in message > <news:B8E0BC69.6226%paulalove3@comcast.net>… >>> Getting-too-long-story short, he says I have an elevated ANA count. Then he >>> explains waht that means and tells me to wait a month to do the test again. >> The wait and see aproach, well, SUCKS!! I cant remember what else you should >> do but one thing sticks out to me, the military. The local VA here is asking >> for anyone that was at desert storm or Viet Nam that have lupus like >> symptoms or were diagnosed with lupus OR their family diagnosed with lupus >> they want to talk to you ASAP. My grandfather and uncles were all there so I >> been trying to beat down their door for more info. But since my dad told the >> army to p*ss off they aint too cool talking to me (trust me its a LONG story >> with a valid reason) >> My advice, sit on the stupid doc till they do something. Even if its not >> lupus its something and its probably treatable beyond what they are doing. >> Keep us posted and good luck! >> Paula from AL
Response:
Paula, Interesting about the VA wanting to talk to any Veteran who served Viet Nam or Desert Storm who has Lupus like symptoms or dx….and family member with dx. My husband served two tours on the DMZ in Viet Nam and lived in, slept in, bathed in, etc etc etc a area that was heavily sprayed with Agent Orange. ( we get a flyer frequently (Agent Orange Review) put out by the VA and I have not seen any mention in it. There is a toll free # 1-800-749-8387 it is the Gulf War/Agent Orange Helpline. Maybe they could answer your questions. They are supposed to be trained to answer benifits and medical care issues pertaining to the Gulf War and Agent Orange. Sherry But like I said I really believe that I have had Lupus begining early on and only dx three yrs ago. "Paula Love" <paulalo…@comcast.net> wrote in message
news:B8E0BC69.6226%paulalove3@comcast.net… – Hide quoted text — Show quoted text -> > Getting-too-long-story short, he says I have an elevated ANA count. Then he > > explains waht that means and tells me to wait a month to do the test again. > The wait and see aproach, well, SUCKS!! I cant remember what else you should > do but one thing sticks out to me, the military. The local VA here is asking > for anyone that was at desert storm or Viet Nam that have lupus like > symptoms or were diagnosed with lupus OR their family diagnosed with lupus > they want to talk to you ASAP. My grandfather and uncles were all there so I > been trying to beat down their door for more info. But since my dad told the > army to p*ss off they aint too cool talking to me (trust me its a LONG story > with a valid reason) > My advice, sit on the stupid doc till they do something. Even if its not > lupus its something and its probably treatable beyond what they are doing. > Keep us posted and good luck! > Paula from AL
Response:
"J" <jwoot…@execulink.com> wrote in message
news:3CBB5DA4.7497BC2D@execulink.com… > Have they checked you for anemia, by the way?
Nope, I am waiting out the month like the Doc asked me to. I am supposed to go in to repeat the blood tests next week. I’ll keep this in mind though. Tim
Response:
"Tim" <tim.bur…@cox.net> wrote in message
news:8EGu8.98865$oN6.2139877@news1.east.cox.net… > "J Rogow" <JRo…@ridgenet.net> wrote in message > news:a9f7l002mj4@enews1.newsguy.com… > > Tim, welcome, and you *have* come to the right place. > > Possibly, Andy, John, or Wes (resident male Lupies) will have better > > information > > than we ladies have (KCat – I said *possibly*) but it sounds as if you > > may have > > the red wolf in your blood. > Red Wolf?
Literary allusion – Lupus, the Red Wolf. – Hide quoted text — Show quoted text -> > If so, stay out of the sun and avoid stress as much as possible (yeah, I > > know, that’s > > almost impossible for you). > Florida–the sunshine state…. > Tim
Response:
Tim wrote: > "J" <jwoot…@execulink.com> wrote in message > news:3CBB2841.410D1F92@execulink.com… > [] > > Anyhow his ANA was 1:640 for many years and was ignored and has been > 1:1280 for > > 4-6 years and still was ignored. > []Hmmm, my ratio was no where near that high, 1:80 I believe he said. Is this > low number, relative to those you posted, indicative of anything such as just > catching things early or reduced risk?
Not necessarily. (if I’m understanding your question correctly). http://groups.google.com/groups?q=+ANA+flare+group:alt.support.lupus+… ANA can vary tremendously over time – even from one day to the next, hence the necessity of getting it checked regularly to monitor disease activity. However, as Sandra and others remind us, ANA levels do not really indicate *severity* of the disease and at times the ANA can be low in a flare or high in a non-flare.<KCat wisdom> http://groups.google.com/groups?q=+%22elevated+ANA%22+group:alt.suppo… http://groups.google.com/groups?q=+%22elevated+ANA%22+group:alt.suppo… Some docs need only see a malar rash and an elevated ANA titre and will jump to the Lupus dx. Others will see 6 of the 11 criteria but won’t see the ones they personally think are significant (kidney problems, pleurisy, cerebritis, anti-dsDNA) so they won’t diagnose. In the UK, and to some small extent here in the US, discussions about "Lupus variants" are often held and these probably include UCTD. Lupus exists in many forms/manifestations and differs from person to person though we may share many similar symptoms. For that reason, IMO, all patients have a lupus variant if they have Lupus or UCTD.<snippets of KCat wisdom> Mine was 180 but they told me "not significant". It hasn’t been rechecked. But then IIRC I have an autoimmune form of thyroid, and I think thyroid sometimes that can cause elevated ANA. Somewhere there’s a pretty comprehensive list of other possibles for elevated ANA which I’m assuming your doctor(s) will test for to rulle in/out. But I’ve lost it. Not sure if it’s in Dr. Wallace’s book or not. KCat (or somebody)…help !! J
Response:
> Getting-too-long-story short, he says I have an elevated ANA count. Then he > explains waht that means and tells me to wait a month to do the test again.
The wait and see aproach, well, SUCKS!! I cant remember what else you should do but one thing sticks out to me, the military. The local VA here is asking for anyone that was at desert storm or Viet Nam that have lupus like symptoms or were diagnosed with lupus OR their family diagnosed with lupus they want to talk to you ASAP. My grandfather and uncles were all there so I been trying to beat down their door for more info. But since my dad told the army to p*ss off they aint too cool talking to me (trust me its a LONG story with a valid reason) My advice, sit on the stupid doc till they do something. Even if its not lupus its something and its probably treatable beyond what they are doing. Keep us posted and good luck! Paula from AL
Response:
Hi Tim, Just a bit more. I wasn’t ignoring the anthrax comment and it does seem that arthralgias and slight temps do occur after the vaccines (but I doubt they’d last this long) and I’m aware of the controversy that such vaccines cause autoimmune disorders, but just like chemicals and other exposures, my opinion is that it could be a trigger not causal. Anyhow, wondering if they’re paying attention now because of the controversy and/or you have a smart doctor who knows that untreated/monitored Lupus can turn nasty very quickly. And after all is said and done, as someone else pointed out, there are other tests which can more definitively pinpoint or rule in/out Lupus. Have they checked you for anemia, by the way? FWIW http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4915a1.htm http://groups.google.com/groups?q=+%22+anthrax+vaccine%22&hl=en&selm=… JMO (not a medic) J PS – Sorry, just not sure what I want to snip below – Hide quoted text — Show quoted text -Tim wrote: > Hi, > Been lurking here for about two weeks and thought I’d introduce myself. I’m > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > motorcycles and (lately a lot) sleeping.<g>. > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > finally told me something new–story sorta’ goes like this: > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > and joint pain for several years. I almost hate to say that the really bad > bone and joint pain started post-anthrax vaccine, but it did. Also there > are several other things I never tied together as well such as a 96.2 body > temp, unexplained exhaustion with high fever written off as "viral febrile > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > getting ready to get out and I demanded some real answers. > Don’t know if any of you have had the pleasure of dealing with military > medicine, so let me briefly explain. Seemingly, the whole point is to look > at you, ask some questions, provide some canned philosohy on how to be > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > to get the troop back to work. From my perspective it was usually easier to > just deal with any pain rather than the bureaucracy. > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > and shoulders xrayed. A while later, I get a call from the medical hobby > shop stating that everything is normal with no sign of arthritis, ‘…try to > exercise more and take motrin for the pain." I know something is wrong, but > how do I get them to look deep enough? As luck would have it, I had made > the young Lt mad and he also sent me off to the lab to give about a quart of > blood after the xrays. This is where my being here comes in. > Got a call from a different Doc stating I needed to come in for a followup > ASAP. I get in there and go through the ususal 20 questions about how I > feel. At this point he asks me if I know why I am there–I rally don’t know > as I was told I was OK, yet again. Getting-too-long-story short, he says I > have an elevated ANA count. Then he explains waht that means and tells me to > wait a month to do the test again. > He also told me not to read the internet ’cause it would scare me. Well I > did and I’m here–should I be scared? He did caveat the whole thing by > saying it was possibly nothing, but his manner was so strikingly different > than I have ever been exposed to in a military hospital that I doubt he was > really straight with me. He was just too forthcoming in offering to treat > my aches and pains–difficult to convey this in words. > So, assuming I go back and the ANA test remains positive, I would appreciate > some advice on what else I should try to prod them into doing to narrow it > all down to a diagnosis. Heck, I’d just appreciate some advice. > Tim
Response:
"J" <jwoot…@execulink.com> wrote in message
news:3CBB5DA4.7497BC2D@execulink.com… – Hide quoted text — Show quoted text -> Hi Tim, > Just a bit more. I wasn’t ignoring the anthrax comment and it does seem that > arthralgias and slight temps do occur after the vaccines (but I doubt they’d > last this long) and I’m aware of the controversy that such vaccines cause > autoimmune disorders, but just like chemicals and other exposures, my opinion is > that it could be a trigger not causal. > Anyhow, wondering if they’re paying attention now because of the controversy > and/or you have a smart doctor who knows that untreated/monitored Lupus can turn > nasty very quickly. And after all is said and done, as someone else pointed > out, there are other tests which can more definitively pinpoint or rule in/out > Lupus. > Have they checked you for anemia, by the way? > FWIW > http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4915a1.htm
http://groups.google.com/groups?q=+%22+anthrax+vaccine%22&hl=en&selm=… c.0110241607.2d5fe665%40posting.google.com&rnum=6 – Hide quoted text — Show quoted text -> JMO (not a medic) > J > PS – Sorry, just not sure what I want to snip below > Tim wrote: > > Hi, > > Been lurking here for about two weeks and thought I’d introduce myself. I’m > > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > > motorcycles and (lately a lot) sleeping.<g>. > > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > > finally told me something new–story sorta’ goes like this: > > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > > and joint pain for several years. I almost hate to say that the really bad > > bone and joint pain started post-anthrax vaccine, but it did. Also there > > are several other things I never tied together as well such as a 96.2 body > > temp, unexplained exhaustion with high fever written off as "viral febrile > > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > > getting ready to get out and I demanded some real answers. > > Don’t know if any of you have had the pleasure of dealing with military > > medicine, so let me briefly explain. Seemingly, the whole point is to look > > at you, ask some questions, provide some canned philosohy on how to be > > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > > to get the troop back to work. From my perspective it was usually easier to > > just deal with any pain rather than the bureaucracy. > > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > > and shoulders xrayed. A while later, I get a call from the medical hobby > > shop stating that everything is normal with no sign of arthritis, ‘…try to > > exercise more and take motrin for the pain." I know something is wrong, but > > how do I get them to look deep enough? As luck would have it, I had made > > the young Lt mad and he also sent me off to the lab to give about a quart of > > blood after the xrays. This is where my being here comes in. > > Got a call from a different Doc stating I needed to come in for a followup > > ASAP. I get in there and go through the ususal 20 questions about how I > > feel. At this point he asks me if I know why I am there–I rally don’t know > > as I was told I was OK, yet again. Getting-too-long-story short, he says I > > have an elevated ANA count. Then he explains waht that means and tells me to > > wait a month to do the test again. > > He also told me not to read the internet ’cause it would scare me. Well I > > did and I’m here–should I be scared? He did caveat the whole thing by > > saying it was possibly nothing, but his manner was so strikingly different > > than I have ever been exposed to in a military hospital that I doubt he was > > really straight with me. He was just too forthcoming in offering to treat > > my aches and pains–difficult to convey this in words. > > So, assuming I go back and the ANA test remains positive, I would appreciate > > some advice on what else I should try to prod them into doing to narrow it > > all down to a diagnosis. Heck, I’d just appreciate some advice. > > Tim
Response:
Tim, Might I sugest that you go to the local bookstore or on the web and buy The Lupus Book by Dr Daniel J Wallace, MD get the revised and expanded edition. That way you will have the information from the leading authority on the Subject and have the ammo if needed for the doctors. Yes a tax free VA check is the preferred for most military….but then I think that Military retirement should be tax free in all states and federal of course. This comes from one that knows the life of a career military person versuses the life they could have had in the civilian world. I know it was their choice but thank God someone was willing to make it!!!! (by the way thank you for your choice!) Sorry no semester breaks this time! Knowledge (regardless of what your Doc said) is the key to getting the answers and the sooner the better. Try to avoid being in the sun it is not your friend and it is especially not the friend of someone with Lupus. The reaction to it is not always the same day. Use a good SunBlock if you are still having to be out on the parade grounds. Sherry "Tim" <tim.bur…@cox.net> wrote in message
news:ZVGu8.99070$oN6.2147806@news1.east.cox.net… – Hide quoted text — Show quoted text -> "Sherry" <sstof…@inreach.com> wrote in message > news:c2Gu8.2639$3l6.302709882@news.inreach.com… > > Lupus is not easy to diagnois, to give the docs a bit of a break. But if > it > > is Lupus I’m sure that you will want a diagnosis prior to your seperation > > from service. (My father "Retired" rather than take a Medical Discharge > and > > then fought with the VA for years….his retirement was important to him > but > > he later regreted the decision…just thought that I might mention that as > I > > am sure your considering all the possibilites of your retirement pay > versus > > a VA check. > Well, I hit 20 years this October. I suppose I’ll have to wait and see what > comes of all of this. I would rather take tax free VA than taxed > retirement–being married to a CPA, I consider this stuff. But, since these > things move at the speed of government, I am pretty sure I’ll be around > until at least October. I work with a guy who was diagnosed with ALS last > summer and they have just gotten around to medically retiring him with a > separation date of 1 June. There are a lot of variable in this equation…. > > Someone with more knowledge will respond I’m sure with what you should > > "request" and have them follow thru on. Mind you NO test is 100% positive > > to prove or disprove Lupus. > > The tests that I had run were of course the ANA, Rheumatoid Factor, DNA > > Antibodies Native, SM & RNP Antibodies, Sjogren’s Antibody (SSA), C3 & C4, > > Sed Rate by modified Westergren, CBC (including Diff/PLT). > > The presence of SM Antibodies is highly specific for SLE since this > antibody > > has not been detected in RA, Sjorgrens, Scleroderma, Mixed Connective > Tissue > > Disease, Dermatomyositis, Polymyosotis, or drug induced LE…..BUT SM > > antibodies are only present in 30% of SLE patients. > > RNP Antibodies are found in Mixed Connective Tissue Disease (MCTD), SLE, > RA, > > Sjorgens, Progressive Systemic Sclerosis, and drug induced LE. The > presence > > of RNP antibodies and the absence of SM abd DS DNA antibodies strongly > > suggests MCTD, while the absence of RNP usually rules out MCTD > > Antibodies to SSA (RO) and SSB (LA) are observed with the highest > frequency > > in Sjogren’s Syndrome, although these antibodies are also found in a > > significant percentage of patients with SLE. > Obviously, I have more reading to do. I’ll have to squeeze it in durng this > coming semester break–I was really looking fwd to 2 weeks off without > having to strain my intellect on technical reading……sigh. > Tim
Response:
"BJ" <B…@sk.nojunk.ca> wrote in message
news:ubmen65m23r4c0@corp.supernews.com… > Hi Tim, >Please continue to talk to us. Tell us what they find with your blood work.
Well, in typically pragmatic male fashion, I’ll brood a while before I talk. > I hope all the women here won’t scare you off. There are men too, but the > girls will treat you special because you’re a guy. We are all Moms at
heart. Grew up in a house with Mom and three sisters. They like me a lot better now that I don’t live with them anymore<g>. Thanks. Tim
Response:
"Sherry" <sstof…@inreach.com> wrote in message
news:c2Gu8.2639$3l6.302709882@news.inreach.com… > Lupus is not easy to diagnois, to give the docs a bit of a break. But if it > is Lupus I’m sure that you will want a diagnosis prior to your seperation > from service. (My father "Retired" rather than take a Medical Discharge and > then fought with the VA for years….his retirement was important to him but > he later regreted the decision…just thought that I might mention that as I > am sure your considering all the possibilites of your retirement pay versus > a VA check.
Well, I hit 20 years this October. I suppose I’ll have to wait and see what comes of all of this. I would rather take tax free VA than taxed retirement–being married to a CPA, I consider this stuff. But, since these things move at the speed of government, I am pretty sure I’ll be around until at least October. I work with a guy who was diagnosed with ALS last summer and they have just gotten around to medically retiring him with a separation date of 1 June. There are a lot of variable in this equation…. – Hide quoted text — Show quoted text -> Someone with more knowledge will respond I’m sure with what you should > "request" and have them follow thru on. Mind you NO test is 100% positive > to prove or disprove Lupus. > The tests that I had run were of course the ANA, Rheumatoid Factor, DNA > Antibodies Native, SM & RNP Antibodies, Sjogren’s Antibody (SSA), C3 & C4, > Sed Rate by modified Westergren, CBC (including Diff/PLT). > The presence of SM Antibodies is highly specific for SLE since this antibody > has not been detected in RA, Sjorgrens, Scleroderma, Mixed Connective Tissue > Disease, Dermatomyositis, Polymyosotis, or drug induced LE…..BUT SM > antibodies are only present in 30% of SLE patients. > RNP Antibodies are found in Mixed Connective Tissue Disease (MCTD), SLE, RA, > Sjorgens, Progressive Systemic Sclerosis, and drug induced LE. The presence > of RNP antibodies and the absence of SM abd DS DNA antibodies strongly > suggests MCTD, while the absence of RNP usually rules out MCTD > Antibodies to SSA (RO) and SSB (LA) are observed with the highest frequency > in Sjogren’s Syndrome, although these antibodies are also found in a > significant percentage of patients with SLE.
Obviously, I have more reading to do. I’ll have to squeeze it in durng this coming semester break–I was really looking fwd to 2 weeks off without having to strain my intellect on technical reading……sigh. Tim
Response:
Hi Tim, I am glad you ignored the doctor and checked us out. Welcome. You have been lurking, so you already know that you can ask or talk about anything here. I stink when it come to where to find things on the computer. I will leave that up to some of the clever ones. I always say that when you "know" there is something wrong; there is something wrong. I am not alone when I say that many a doctor gave me the brush off. They weren’t military docs either. They were idiots. I particularly noticed that you mentioned bone pain. I suffer terribly from that. It is worse than the muscle pain. It is part of my lupus. A number of your symptoms say lupus. It could be something else, but it is something. Xrays will not show inflammation. A body CT is needed for that. I would be worried too, if I were you. You have to find the problem to deal with it medically and emotionally. Lupus is the most dangerous when it goes undiagnosed and untreated. Please continue to talk to us. Tell us what they find with your blood work. I hope all the women here won’t scare you off. There are men too, but the girls will treat you special because you’re a guy. We are all Moms at heart. BJ-Saskatchewan, Canada "Tim" <tim.bur…@cox.net> wrote in message
news:%WEu8.98069$oN6.2136171@news1.east.cox.net… – Hide quoted text — Show quoted text -> Hi, > Been lurking here for about two weeks and thought I’d introduce myself. I’m > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > motorcycles and (lately a lot) sleeping.<g>. > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > finally told me something new–story sorta’ goes like this: > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > and joint pain for several years. I almost hate to say that the really bad > bone and joint pain started post-anthrax vaccine, but it did. Also there > are several other things I never tied together as well such as a 96.2 body > temp, unexplained exhaustion with high fever written off as "viral febrile > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > getting ready to get out and I demanded some real answers. > Don’t know if any of you have had the pleasure of dealing with military > medicine, so let me briefly explain. Seemingly, the whole point is to look > at you, ask some questions, provide some canned philosohy on how to be > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > to get the troop back to work. From my perspective it was usually easier to > just deal with any pain rather than the bureaucracy. > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > and shoulders xrayed. A while later, I get a call from the medical hobby > shop stating that everything is normal with no sign of arthritis, ‘…try to > exercise more and take motrin for the pain." I know something is wrong, but > how do I get them to look deep enough? As luck would have it, I had made > the young Lt mad and he also sent me off to the lab to give about a quart of > blood after the xrays. This is where my being here comes in. > Got a call from a different Doc stating I needed to come in for a followup > ASAP. I get in there and go through the ususal 20 questions about how I > feel. At this point he asks me if I know why I am there–I rally don’t know > as I was told I was OK, yet again. Getting-too-long-story short, he says I > have an elevated ANA count. Then he explains waht that means and tells me to > wait a month to do the test again. > He also told me not to read the internet ’cause it would scare me. Well I > did and I’m here–should I be scared? He did caveat the whole thing by > saying it was possibly nothing, but his manner was so strikingly different > than I have ever been exposed to in a military hospital that I doubt he was > really straight with me. He was just too forthcoming in offering to treat > my aches and pains–difficult to convey this in words. > So, assuming I go back and the ANA test remains positive, I would appreciate > some advice on what else I should try to prod them into doing to narrow it > all down to a diagnosis. Heck, I’d just appreciate some advice. > Tim
Response:
"J Rogow" <JRo…@ridgenet.net> wrote in message
news:a9f7l002mj4@enews1.newsguy.com… > Tim, welcome, and you *have* come to the right place. > Possibly, Andy, John, or Wes (resident male Lupies) will have better > information > than we ladies have (KCat – I said *possibly*) but it sounds as if you > may have > the red wolf in your blood.
Red Wolf? > If so, stay out of the sun and avoid stress as much as possible (yeah, I > know, that’s > almost impossible for you).
Florida–the sunshine state…. Tim
Response:
"J" <jwoot…@execulink.com> wrote in message
news:3CBB2841.410D1F92@execulink.com… > Welcome Tim, > Glad you’ve been reading and I hope you’ve checked out KCat’s links and Andy’s. > My brother has symptoms similar to you and gosh can he sleep, even tho the apnea > now seems under control with a new mask. > Anyhow his ANA was 1:640 for many years and was ignored and has been 1:1280 for > 4-6 years and still was ignored. > Keeps getting told he’s on some wait list to see a rheumy. AFAIK all other > possibles for high ANA have been ruled out in his case.
Hmmm, my ratio was no where near that high, 1:80 I believe he said. Is this low number relative to those you posted indicative of anything such as just catching things early or reduced risk? > I pass along info that he might require and try to be > supportive ("read"..nag)
I have 3 sisters and a wife of 16 years, I understand….. > Here’s some labwork urls (and/or differentials) because there’s more to a > diagnose of Lupus than just the ANA.
Thanks–will check them out. Tim
Response:
Hi Tim, I am also a product of Military and Civilian Medicine. I was raised in the US Army (mostly on AF bases). I believe my Lupus began as a child or at least a teen. I also had gone undiagnoised till a few years ago. BUT the Military docs are not the only ones who missed it because I have been seeing civilian doctors for more than 30 yrs! Lupus is not easy to diagnois, to give the docs a bit of a break. But if it is Lupus I’m sure that you will want a diagnosis prior to your seperation from service. (My father "Retired" rather than take a Medical Discharge and then fought with the VA for years….his retirement was important to him but he later regreted the decision…just thought that I might mention that as I am sure your considering all the possibilites of your retirement pay versus a VA check. Someone with more knowledge will respond I’m sure with what you should "request" and have them follow thru on. Mind you NO test is 100% positive to prove or disprove Lupus. The tests that I had run were of course the ANA, Rheumatoid Factor, DNA Antibodies Native, SM & RNP Antibodies, Sjogren’s Antibody (SSA), C3 & C4, Sed Rate by modified Westergren, CBC (including Diff/PLT). The presence of SM Antibodies is highly specific for SLE since this antibody has not been detected in RA, Sjorgrens, Scleroderma, Mixed Connective Tissue Disease, Dermatomyositis, Polymyosotis, or drug induced LE…..BUT SM antibodies are only present in 30% of SLE patients. RNP Antibodies are found in Mixed Connective Tissue Disease (MCTD), SLE, RA, Sjorgens, Progressive Systemic Sclerosis, and drug induced LE. The presence of RNP antibodies and the absence of SM abd DS DNA antibodies strongly suggests MCTD, while the absence of RNP usually rules out MCTD Antibodies to SSA (RO) and SSB (LA) are observed with the highest frequency in Sjogren’s Syndrome, although these antibodies are also found in a significant percentage of patients with SLE. One thing that you should also remember is that the ANA tests can also be Neg and ….Kat help me out here my mind went blank. Good luck!!!! Sherry "Tim" <tim.bur…@cox.net> wrote in message
news:%WEu8.98069$oN6.2136171@news1.east.cox.net… – Hide quoted text — Show quoted text -> Hi, > Been lurking here for about two weeks and thought I’d introduce myself. I’m > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > motorcycles and (lately a lot) sleeping.<g>. > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > finally told me something new–story sorta’ goes like this: > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > and joint pain for several years. I almost hate to say that the really bad > bone and joint pain started post-anthrax vaccine, but it did. Also there > are several other things I never tied together as well such as a 96.2 body > temp, unexplained exhaustion with high fever written off as "viral febrile > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > getting ready to get out and I demanded some real answers. > Don’t know if any of you have had the pleasure of dealing with military > medicine, so let me briefly explain. Seemingly, the whole point is to look > at you, ask some questions, provide some canned philosohy on how to be > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > to get the troop back to work. From my perspective it was usually easier to > just deal with any pain rather than the bureaucracy. > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > and shoulders xrayed. A while later, I get a call from the medical hobby > shop stating that everything is normal with no sign of arthritis, ‘…try to > exercise more and take motrin for the pain." I know something is wrong, but > how do I get them to look deep enough? As luck would have it, I had made > the young Lt mad and he also sent me off to the lab to give about a quart of > blood after the xrays. This is where my being here comes in. > Got a call from a different Doc stating I needed to come in for a followup > ASAP. I get in there and go through the ususal 20 questions about how I > feel. At this point he asks me if I know why I am there–I rally don’t know > as I was told I was OK, yet again. Getting-too-long-story short, he says I > have an elevated ANA count. Then he explains waht that means and tells me to > wait a month to do the test again. > He also told me not to read the internet ’cause it would scare me. Well I > did and I’m here–should I be scared? He did caveat the whole thing by > saying it was possibly nothing, but his manner was so strikingly different > than I have ever been exposed to in a military hospital that I doubt he was > really straight with me. He was just too forthcoming in offering to treat > my aches and pains–difficult to convey this in words. > So, assuming I go back and the ANA test remains positive, I would appreciate > some advice on what else I should try to prod them into doing to narrow it > all down to a diagnosis. Heck, I’d just appreciate some advice. > Tim
Response:
Tim, welcome, and you *have* come to the right place. Possibly, Andy, John, or Wes (resident male Lupies) will have better information than we ladies have (KCat – I said *possibly*) but it sounds as if you may have the red wolf in your blood. If so, stay out of the sun and avoid stress as much as possible (yeah, I know, that’s almost impossible for you). Lupus is *not* a death sentence, many of us manage to live fairly "normal" lives with proper care and medication. I understand about military docs – as an Army brat I’ve seen more than my share. However, it sounds as if you’ve gotten one who is new enough to care, that’s a really good start. Wish I had some words of great wisdom to offer – but follow-through and get as many answers as possible. Good luck Judith, near China Lake SoCal "Tim" <tim.bur…@cox.net> wrote in message
news:%WEu8.98069$oN6.2136171@news1.east.cox.net… – Hide quoted text — Show quoted text -> Hi, > Been lurking here for about two weeks and thought I’d introduce myself. I’m > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > motorcycles and (lately a lot) sleeping.<g>. > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > finally told me something new–story sorta’ goes like this: > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > and joint pain for several years. I almost hate to say that the really bad > bone and joint pain started post-anthrax vaccine, but it did. Also there > are several other things I never tied together as well such as a 96.2 body > temp, unexplained exhaustion with high fever written off as "viral febrile > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > getting ready to get out and I demanded some real answers. > Don’t know if any of you have had the pleasure of dealing with military > medicine, so let me briefly explain. Seemingly, the whole point is to look > at you, ask some questions, provide some canned philosohy on how to be > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > to get the troop back to work. From my perspective it was usually easier to > just deal with any pain rather than the bureaucracy. > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > and shoulders xrayed. A while later, I get a call from the medical hobby > shop stating that everything is normal with no sign of arthritis, ‘…try to > exercise more and take motrin for the pain." I know something is wrong, but > how do I get them to look deep enough? As luck would have it, I had made > the young Lt mad and he also sent me off to the lab to give about a quart of > blood after the xrays. This is where my being here comes in. > Got a call from a different Doc stating I needed to come in for a followup > ASAP. I get in there and go through the ususal 20 questions about how I > feel. At this point he asks me if I know why I am there–I rally don’t know > as I was told I was OK, yet again. Getting-too-long-story short, he says I > have an elevated ANA count. Then he explains waht that means and tells me to > wait a month to do the test again. > He also told me not to read the internet ’cause it would scare me. Well I > did and I’m here–should I be scared? He did caveat the whole thing by > saying it was possibly nothing, but his manner was so strikingly different > than I have ever been exposed to in a military hospital that I doubt he was > really straight with me. He was just too forthcoming in offering to treat > my aches and pains–difficult to convey this in words. > So, assuming I go back and the ANA test remains positive, I would appreciate > some advice on what else I should try to prod them into doing to narrow it > all down to a diagnosis. Heck, I’d just appreciate some advice. > Tim
Response:
Welcome Tim, Glad you’ve been reading and I hope you’ve checked out KCat’s links and Andy’s. My brother has symptoms similar to you and gosh can he sleep, even tho the apnea now seems under control with a new mask. He’d like to sleep 10 – 12 hours a day, if he could. Says it’s been that way even back to his teens, so perhaps he’s had Lupus for longer than we think? I do remember him getting "rosacea" when he was a teen but we never thought much about it, because we all blondes (but not necessarily dumb LOL) Anyhow his ANA was 1:640 for many years and was ignored and has been 1:1280 for 4-6 years and still was ignored. Keeps getting told he’s on some wait list to see a rheumy. AFAIK all other possibles for high ANA have been ruled out in his case. He’s older than you, younger by me by 2 years and I keep bugging him to at least get a urinalysis to monitor his kidneys coz he often complains (amongst others) about kidney /flank pain. So since he doesn’t have ‘puter himself, I’m here, "educating" myself and when he calls me I pass along info that he might require and try to be supportive ("read"..nag) Here’s some labwork urls (and/or differentials) because there’s more to a diagnose of Lupus than just the ANA. http://www.mtio.com/lupus/lfalt1.htm http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs15.htm http://www.lupus.org/education/brochures/labtests.html http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs11.htm (Lupus in men) You should be scared, this is the scariest/funniest/bestest newsgroup I’ve ever seen. <g> And I bet you and John might have a lot in common…John in Utopia, Ont. I love motorcycles, used to ride with hubby on BSA (no brakes/lights), then we got serious and had a Triumph 650. I used to fall asleep on the back of that one. The other scarey thing, when I read your post, is that you might/could be retired and/or lose your benefits if you get a dx of Lupus?? Can you see a rheumy privately? Otherwise, others will tell you here that some Lupus is mild and other is more severe, affecting the organs. So we’ll just hope for now that you have the mild type. Stick around, BJ will have lots of questions for you. She keeps notes LOL..just kidding, but man that woman has the greatest memory I’ve ever seen ! Later, and please stick around, we have some who show up here and then they disappear and then we wonder what happened. (or I do). Ask any questions, someone will know the answer or tell you their experiences. J – that’s my advice. – Hide quoted text — Show quoted text -Tim wrote: > Hi, > Been lurking here for about two weeks and thought I’d introduce myself. I’m > Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, > motorcycles and (lately a lot) sleeping.<g>. > Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc > finally told me something new–story sorta’ goes like this: > Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches > and joint pain for several years. I almost hate to say that the really bad > bone and joint pain started post-anthrax vaccine, but it did. Also there > are several other things I never tied together as well such as a 96.2 body > temp, unexplained exhaustion with high fever written off as "viral febrile > illness", facial skin rashes dismissed as rosacia, alleged gout with normal > uric acid, etc, etc, etc. However, after 19 years of the brush off, I am > getting ready to get out and I demanded some real answers. > Don’t know if any of you have had the pleasure of dealing with military > medicine, so let me briefly explain. Seemingly, the whole point is to look > at you, ask some questions, provide some canned philosohy on how to be > "healthy", and prescribe motrin, naprocyn, or various other innocuous pills > to get the troop back to work. From my perspective it was usually easier to > just deal with any pain rather than the bureaucracy. > So anyway, after whining long enough I get my ankles, knees, hands, elbows, > and shoulders xrayed. A while later, I get a call from the medical hobby > shop stating that everything is normal with no sign of arthritis, ‘…try to > exercise more and take motrin for the pain." I know something is wrong, but > how do I get them to look deep enough? As luck would have it, I had made > the young Lt mad and he also sent me off to the lab to give about a quart of > blood after the xrays. This is where my being here comes in. > Got a call from a different Doc stating I needed to come in for a followup > ASAP. I get in there and go through the ususal 20 questions about how I > feel. At this point he asks me if I know why I am there–I rally don’t know > as I was told I was OK, yet again. Getting-too-long-story short, he says I > have an elevated ANA count. Then he explains waht that means and tells me to > wait a month to do the test again. > He also told me not to read the internet ’cause it would scare me. Well I > did and I’m here–should I be scared? He did caveat the whole thing by > saying it was possibly nothing, but his manner was so strikingly different > than I have ever been exposed to in a military hospital that I doubt he was > really straight with me. He was just too forthcoming in offering to treat > my aches and pains–difficult to convey this in words. > So, assuming I go back and the ANA test remains positive, I would appreciate > some advice on what else I should try to prod them into doing to narrow it > all down to a diagnosis. Heck, I’d just appreciate some advice. > Tim
Response:
Hi, Been lurking here for about two weeks and thought I’d introduce myself. I’m Tim, a 38yo USAF Senior NCO. I live in NW Florida. I enjoy computers, motorcycles and (lately a lot) sleeping.<g>. Well, after years of being fed Motrin and ignored, two weeks ago a USAF Doc finally told me something new–story sorta’ goes like this: Been having a lot of, to me abnormal for 38yo otherwise healthy male, aches and joint pain for several years. I almost hate to say that the really bad bone and joint pain started post-anthrax vaccine, but it did. Also there are several other things I never tied together as well such as a 96.2 body temp, unexplained exhaustion with high fever written off as "viral febrile illness", facial skin rashes dismissed as rosacia, alleged gout with normal uric acid, etc, etc, etc. However, after 19 years of the brush off, I am getting ready to get out and I demanded some real answers. Don’t know if any of you have had the pleasure of dealing with military medicine, so let me briefly explain. Seemingly, the whole point is to look at you, ask some questions, provide some canned philosohy on how to be "healthy", and prescribe motrin, naprocyn, or various other innocuous pills to get the troop back to work. From my perspective it was usually easier to just deal with any pain rather than the bureaucracy. So anyway, after whining long enough I get my ankles, knees, hands, elbows, and shoulders xrayed. A while later, I get a call from the medical hobby shop stating that everything is normal with no sign of arthritis, ‘…try to exercise more and take motrin for the pain." I know something is wrong, but how do I get them to look deep enough? As luck would have it, I had made the young Lt mad and he also sent me off to the lab to give about a quart of blood after the xrays. This is where my being here comes in. Got a call from a different Doc stating I needed to come in for a followup ASAP. I get in there and go through the ususal 20 questions about how I feel. At this point he asks me if I know why I am there–I rally don’t know as I was told I was OK, yet again. Getting-too-long-story short, he says I have an elevated ANA count. Then he explains waht that means and tells me to wait a month to do the test again. He also told me not to read the internet ’cause it would scare me. Well I did and I’m here–should I be scared? He did caveat the whole thing by saying it was possibly nothing, but his manner was so strikingly different than I have ever been exposed to in a military hospital that I doubt he was really straight with me. He was just too forthcoming in offering to treat my aches and pains–difficult to convey this in words. So, assuming I go back and the ANA test remains positive, I would appreciate some advice on what else I should try to prod them into doing to narrow it all down to a diagnosis. Heck, I’d just appreciate some advice. Tim
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