Preparing for rheumatologist appointment.

[zizzcat]

Hi

My rheumatology appointment is Thursaday.
my ENT is recommending that the rheumatologist consider the possibility of Wegner's as a diagnosis, or treat me as though I had Wegners, due to lesions in the nose ( by now practically gone) my present diagnosis is Diffuse Undifferentiated Connective Tissue Disease. I'm being treated mostly with a moderately high dose of Imuran(175 mgs). I am ANCA negative.

I was hoping to get some feedback about symptoms I'm going to discuss with my doctor to see if any seem like Wegner's;
significant scaring in the right kidney, scaring and some atrophy of the pancreas, some scarring of the lungs and diseased airways, congestion and wheezing in the trachea, coughing fits (that sometimes make my throat close up and can't breathe). Lesions in the nose with scabs, swollen, painful lymph nodes, non contagious conjunctivitis in the eyes, redness in the eyes, feeling constantly dehydrated, cannot sleep with my back flat because my bronchi and throat tighten up and I cough and can't breathe, joints that feel sprained,moderately high C-Reactive Protein. Prior to Imuran I could barely walk, had stage 4 kidney disease, and even with a moderate dose had severe spasms and pain in and around different organs, specially kidneys and intestines, and sometimes felt like joints or bones were cracking. Of course the main symptom when not doing well is very heavy, stupendous fatigue.

I'd really appreciate some feedback as to whether these symptoms seem relevant. My blood work has been good but I am exhausted and can't get anything done. I'm looking for the light at the end of the tunnel.

thanks,

Hope

[Dirty Don]

Hope, Phil just said it best on another thread...one day at a time, and in your case, one problem at a time...sometimes fixing one thing clears up 2 others...you'll find your way along that path. You've got a lot going on...are they all relevant to WG? Mmmm, some seem to be...the lungs, coughing fits, conjunctivitis/eye problems, and kidney issues. Some of them could be med problems too. Your rheumy should be able to define some of that. While you may not have full fledged WG, you are most certainly in a related category...you need to follow protocols, have trusted and experienced docs (as in WG experienced), and be strong within yourself that you can deal with all of this...sighs...we all do. Best to you.

[zizzcat]

There is a type of vasculitis called mesenteric vasculitis, which causes inflammation and spasms of the mesenteric vein system in the abdomen. My main rheumatologist believes that it is possible that I had this before the Imuran was increased again. It can be caused by immune illnesses which cause vasculitis and it affects the intestines primarily.

I have read that Wegner's can affect any organ in the body, including the brain.

[drz]

There is a type of vasculitis called mesenteric vasculitis, which causes inflammation and spasms of the mesenteric vein system in the abdomen. My main rheumatologist believes that it is possible that I had this before the Imuran was increased again. It can be caused by immune illnesses which cause vasculitis and it affects the intestines primarily.

I have read that Wegner's can affect any organ in the body, including the brain.

True, as several here can verify. If your joint pain is roving, that and the sinus/nasal things would be strong Wegs indicators in my book as they were first two symptoms I developed. I am on same dosage of generic Imuran and am now showing normal ANCA readings but they were off the scale when I was diagnosed. I also had significant kidney and lung damage and scleritis eye problems before my diagnosis. Fatigue is present for most of us for various reasons--meds, damage to organs like lungs, kidneys, respiratory system etc.

Some time a while back some one posted a web site where you input your symptoms and possible and probably diagnoses come up. I did it and Wegs was number one on the list. I wonder what it would indicate for you?

[Alysia]

Hi Hope,
diagnosis is important, but more important is what treatment he will give you.
and it must be something "strong", like RTX, which is used in more AI diseases, not only WG.
dont let him send you home without it.
good luck and continue posting.

[mishb]

Some time a while back some one posted a web site where you input your symptoms and possible and probably diagnoses come up. I did it and Wegs was number one on the list. I wonder what it would indicate for you?


Below is the website that Sangye posted.......it is basically a symptom sorter.......It keeps coming up with Wegeners for me
I think I am a weggie :flapper:

FindZebra - The search engine for difficult medical cases (http://findzebra.compute.dtu.dk/)

Separate you symptoms with a comma, in the search field and then push enter......fairly straight forward

[Dirty Don]

If you look good in the mirror, but are melting away inside...you must be a weggie.
If you sneeze or cough and have to excuse all the blood...you must be a weggie.
If you're feeling poorly and everyone says you're fine...you must be a weggie.
If your joints ache in different places everyday...you must be a weggie.
If you hate docs who say 'you're OK, take 2 of these and call me Monday'...you must be a weggie.

-who needs all these analyzers and charts...it's easy to be a weggie! Have a nice day! Toddles off looking for that damn cup of coffee again...sighs

[Alysia]

If you look good in the mirror, but are melting away inside...you must be a weggie.
If you sneeze or cough and have to excuse all the blood...you must be a weggie.
If you're feeling poorly and everyone says you're fine...you must be a weggie.
If your joints ache in different places everyday...you must be a weggie.
If you hate docs who say 'you're OK, take 2 of these and call me Monday'...you must be a weggie.

-who needs all these analyzers and charts...it's easy to be a weggie! Have a nice day! Toddles off looking for that damn cup of coffee again...sighs

wow don. it is great :thumbsup: all we need is some music to it :smile:

[mishb]

wow don. it is great :thumbsup: all we need is some music to it :smile:


........and then we do the "Weggie" Dance :hug3: :hug3: