Diagnosis - "Limited" Wegener's Granulomatosis

[seied]

Hello everyone,


There's a diagnosis subclassification of "Limited" for Wegener's Granulomatosis (GPA) with "no lung or kidney involvement."

If this supposed to mean that there's a strand of 'benevolent' GPA, how do I change mine? :mad1:

As far as I know, without medical treatment, GPA WILL attack and destroy lungs and kidneys very fast.


Does anyone know if the word "limited" in this diagnosis can become a problem in the future when applying for benefits or medical coverage?

Thanks!

Ed.

[NatriceRomeo]

I have “limited” Wegeners. I have not been diagnosed with kidney involvement but do have hematuria as well as a long list of other ailments. I have had the disease for a long time & my Dr is surprised that it has stayed “limited”.


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[seied]

I have “limited” Wegeners. I have not been diagnosed with kidney involvement but do have hematuria as well as a long list of other ailments. I have had the disease for a long time & my Dr is surprised that it has stayed “limited”.


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Thanks for the reply.
May I ask, has your insurance (health, disability, SSA, etc.) ever denied you any type of coverage or benefits?

Does your doctor think that it 'is' limited GPA or that your diagnosis hasn't been corrected to full-blown GPA?


Thanks,
Ed.

[NatriceRomeo]

I have had some issues with insurance but they eventually will cover everything. It just feels like it is never in a timely manner. I also have never been on disability though. So I may not be a good person to talk to. Im covered under my husbands insurance. I really don’t see the benefit of not covering medical stuff because it can lead to disaster that would cost the insurance company more money.
I’m really not sure if the term “limited” is still used as often as it used to be. This is because (according to my reading) you cannot say for sure it’s not in the lung or kidney without a biopsy. So if you have a cough or what ever- this could indicate that it’s in your lungs you just have not developed granulomas.


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[drz]

I thought they dropped that term and moved to a more descriptive use of terms like GPA with then list areas affected. Maybe that was one of the changes proposed but not adopted although many doctors use it I hope.

[annekat]

I have always learned on this forum, from people more knowledgeable than I, that WG/GPA is very unpredictable and may at any time strike an area of the body that has not been affected before. Therefore, the term "limited" is misleading, because it implies that the disease will never venture beyond its current involvement. For some, it stays in the sinuses, ears, etc. and never goes further, while others may be in remission for years only to have it crop up in an area such as the kidneys where it never was apparent before. I feel lucky to have no kidney involvement after 6 years, but I do have lung involvement in addition to the sinus and ear stuff. I think Wegs is too capricious to be labelled as limited, though some are lucky enough to have it turn out that way. But at the time of diagnosis, I really don't think that word should be used, since what may lie ahead will be very uncertain.

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