Question:
Lyndy, I understand what you mean by not getting "bogged down" with getting a name for your illness, however when you have symthoms and you don’t have a reason/name for whats going on people in general tend not to take you very serious. They also like to poo poo it off as if your complaining about a cold or something in comparison to that. Thats why for me it is so important give this illness a name. Heather
Response:
Unfortunately, many times the definition of"remission" lies with the physician’s opinion, not even in blood tests. My blood test have been negative for lupus at times. I still would have the symptoms. One physician wanted to put me on Immuran, then his partner saw me for an appt. and said "You don’t look like you have lupus." So, it all depends on the physician as to how they will label you. This is just an example, because I do research and I have been seen by many different physicians, all with their own different opinions. I was married to one too. They are only human, and many times it is the patient who teaches the physician. I do beleive there are experts in the field and that you can find them.
Response:
Heather. When I posted "that" message (that earned me a broadside) I was asking a REAL question NOT a rhetorical one. Because quite a few people seemed to be having the same problem in not being diagnosed, I was curious as to what problems this was causing. Thank you for your reply. Lyndy – Hide quoted text — Show quoted text -HBaker831 wrote in message <19990602092751.17877.00000…@ng-cf1.aol.com>… >Lyndy, > I understand what you mean by not getting "bogged down" with >getting a name for your illness, however when you have symthoms and you don’t >have a reason/name for whats going on people in general tend not to take you >very serious. They also like to poo poo it off as if your complaining about a >cold or something in comparison to that. Thats why for me it is so important >give this illness a name. Heather
Response:
- Hide quoted text — Show quoted text —— Original Message —– From: B Moffitt <bm…@nol.net> To: <alt.support.lu…@list.deja.com> Sent: Thursday, May 27, 1999 10:11 PM Subject: Re: lupus: in remission or not? > Check out the criteria for Lupus at > http://internet-plaza.net/lupus/info/diag.html > It is necessary to have 4 of the 11 symptoms for it to be Lupus. Actually, > if you have any 3 and then a high ANA count, they consider it Lupus. > However, you can have 4 of the other symptoms, a low ANA and still be > diagnosed with Lupus. So yes, you can have a low ANA and still have Lupus. > HTH, > Beth > >Grizzly wrote in message <7i4ues$mc…@nnrp1.deja.com>… > >Is it possible to have Lupus but it not show up in the > >bloodwork? > >– > >Grizzly > My doctor says the blood wrk indicates no; however my sister and an aunt >both tested yes for it and I have almost all of the symtoms – Ratss
Response:
Check out the criteria for Lupus at http://internet-plaza.net/lupus/info/diag.html It is necessary to have 4 of the 11 symptoms for it to be Lupus. Actually, if you have any 3 and then a high ANA count, they consider it Lupus. However, you can have 4 of the other symptoms, a low ANA and still be diagnosed with Lupus. So yes, you can have a low ANA and still have Lupus. HTH, Beth – Hide quoted text — Show quoted text ->Grizzly wrote in message <7i4ues$mc…@nnrp1.deja.com>… >Is it possible to have Lupus but it not show up in the >bloodwork? >– >Grizzly
Response:
<<It is necessary to have 4 of the 11 symptoms for it to be Lupus. Actually, if you have any 3 and then a high ANA count, they consider it Lupus. However, you can have 4 of the other symptoms, a low ANA and still be diagnosed with Lupus. So yes, you can have a low ANA and still have lupus.>> Actually, the diagnosis isn’t quite that easy. The criteria are weighted. Physicians generally only conclusively believe what they can personally witness, measure and document. This means they give much greater weight to objective lab test results than to subjective symptoms. It’s not that symptoms aren’t important. It’s simply that physicians interpret them in light of objective evidence. Therefore, if there is little to no objective evidence, they often write off the symptoms as psychogenic, assign some lesser diagnosis, and/ or take a wait and see stance on the lab work. I can’t tell you how many times I’ve argued about symptoms with my husband, a physician. It’s frustrating sometimes because all he cares about it lab and other test results. I also believe these results are important, but I tend to give greater weight to symptoms than my husband would. This is one reason why I was convinced my daughter had lupus long before her doctors were convinced. Sandra
Response:
I was diagnosed with Lupus about 8 months ago according to symptoms and blood tests. I’m not feeling much better but the blood work comes back negative now.(ANA) My doctors are now wondering if I really do have Lupus. Is it possible to have Lupus but it not show up in the bloodwork? Is bloodwork negative if your not having a flare? Thanks! — Grizzly –== Sent via Deja.com http://www.deja.com/ ==– —Share what you know. Learn what you don’t.—
Response:
gets frustrating huh! One minute "you have lupus" next office visit "you know this may not be lupus could be…." ugh.. If you could have one test that says yes or no and then stays that way it would help but from what I can tell is it is not predictable. Just depends on who you are seeing. Seems like when lab is negative you have to defend your symptoms. Like you are making it up or something. Gets old . Hang in there. Sheila
Response:
<< I was diagnosed with Lupus about 8 months ago according to symptoms and blood tests. I’m not feeling much better but the blood work comes back negative now.(ANA) My doctors are now wondering if I really do have Lupus. Is it possible to have Lupus but it not show up in the bloodwork? Is bloodwork negative if your not having a flare? Thanks! I assume that during the past 8 months, you’ve been receiving treatment for lupus. My daughter’s rheumatologist says that it’s a sign the therapy is working when the blood tests revert to normal values. Perhaps you’re simply now in remission. On what tests and symptoms did they originally base their diagnosis? Sandra
Response:
In article <19990522153500.20837.00004…@ng-cf1.aol.com>, Lees06 <lee…@aol.com> writes >gets frustrating huh! One minute "you have lupus" next office visit "you know >this may not be lupus could be…." ugh.. If you could have one test that says >yes or no and then stays that way it would help but from what I can tell is it >is not predictable. Just depends on who you are seeing. Seems like when lab is >negative you have to defend your symptoms. Like you are making it up or >something. Gets old . Hang in there. Sheila
I think its also the nature of lupus itself, ie the symptoms (if any) you show vary from time to time. Sure, it would be tidier if it stayed the same, but who said life has to be tidy? — Andy For Austria & its philately, Lupus, & much else visit http://www.kitzbuhel.demon.co.uk
Response:
I didn’t have the problem about not finding a "name" for my illness. But if you can treat the symptoms that are bothering you – isn’t that enough? (I don’t mean to be nasty or anything – PLEASE don’t take offense) I just try not to get too bogged down with my Lupus and associated metaphorical headaches and make them as small a part of my life as possible. Lyndy 
Response:
Lyndy, Because you said you didn’t have to wait for a diagnosis I don’t think you’re qualified to criticize others. If you suffered for years like myself and many many others have without having a name you would understand. You would feel the the anxiety when someone ask you what is wrong and all you can say is I don’t have a diagnosis. Or when people ask, "well, what do the doctors say?" and all you can say is they aren’t sure. This makes it very difficult for the people around you to treat your illness as being real. Believe me, I know. Also you would know and understand that not having a diagnosis inherently makes you feel like you may be exagerating you symptoms. Even though they are real, when you consult a specialist and they aren’t sure it makes you wonder if you have lost your mind. Chronic illness brings with it many new stresses. Not having a diagnosis multiplies the stress. It isn’t that anyone is hung up on a name or they are not as adept as you in moving ahead. Any counselor or psychiatrist understands the ramifications of being ill for years without a diagnosis. Be kind to people who are struggling; no matter what they are struggling with or how trivial you think it is in "your opinion." Before you criticize walk in someone elses shoes. Respectfully, Terri
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