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I have talked about my nephew before, well, he went to a rheumatologist in Portland. The doctor told him he was too young to have lupus(he's 29) and that mostly women get it, hardly any men, and that his blood work barely showed any symptoms. So far, I have only been able to talk to his wife, due to his work schedule, but I sure plan on talking with him this week to get the full scoop. I have never heard anything so stupid coming from a speciality dr in my life. I was 32 when my first symptoms started.

I want to encourage him to see a different doctor. Does he have to suffer for 3 or more years before he will be old enough? Give me a break.

Sorry to carry on, but I am just flabergasted by what he was told.


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Whirlway, I get so angry when a doctor tells a patient that!!! Several years ago I was having trouble with my leg and with walking. I asked my doctor if I might possibly have a blocked artery, especially since other family members have had them. He told me I was too young but had me tested (I think to shut me up). And sure enough, I had a blocked femerol artery and had to have balloon angioplasty to open it up. Tell your nephew to nag his doctor until the doctor gives in and does further testing. good luck to him. Sherion

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Hello Whirlway,


I don't even know where I would begin if I were to recount the bad experiences I have had with doctors. I can harldly even believe the things that I have went through. I don't like it when I read posts where other people are having similar kinds of problems but at least it lets me know that it's not just me with really bad luck.


Obviously, from what I have read, there seem to be a lot of doctors out there who are insensitive and are not truly concerned about helping their patients. Many are even rude and careless in what they say.


I put up a post awhile back regarding a review of a book called "Travels with the Wolf". It is about a woman struggling with doctors and the medical system and her experiences with Lupus.


I recently purchased the book and have begun reading it. I keep asking myself. How could it be? It's bad enough that I have been going through what I would say is some kind of crazy fate where my records were discounted and the doctors that I've had have not listened--even ignoring the fact that I had a seizure and high ANA. How...how could someone else, so far away and even with access to a large city of doctors, have went through the same kind of rubbish?


A different place, a different time--but the same kind of "sweeping it under the rug".


Melissa, the author, was told by a neurologist that she was having pseudo-seizures!


Whirlway, I completely understand your frustration. We are not doctors, but many of us know that age has nothing to do with Lupus. We ask ourselves: How could a medical professional who specializes in a disease like Lupus, say something like that? As many questions as there may be that are unanswered regarding autoimmune diseases, there remains hope for answers. However, I can't fathom a reason for specialists who know better but say things that are downright wrong.





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Good grief! That was some pretty stupid comments from a doctor! I certainly understand your frustration.

I did find this on ISN. It might be helpful to your nephew in what's going on. It's the eleven criteria for diagnosing Lupus. This page also discusses other tests that are run in diagnosing. Hopefully this will help. Please keep us informed.

Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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