What are your thoughts on this?

[marta]

I have a friend who has been quite ill since spring. Her and I ski together, and work in the same place... she's a pretty healthy active chica. She all of the sudden lost her strength and can't go far without loosing her breath. She was initially told that it's her heart and that it's only working at 40%. When she went to a heart specialist just a few days ago, she was told that there is nothing wrong with her heart and her problem is in her lungs. So now she's waiting to see a lung specialist. Her mom told me that they think it might be an infection that has been holding on since spring.

I'm wondering if any of you presented this way at the start - no sinus involvement. She apparently still has a good appetite, but not a lot of energy, and if you know her before, you'd be blown away as she is one stroooong girl. I know that two of us in the same place would be way too much of a coincidence, but just seeing how weak she is, and the fact that it's lungs kinda freaks me out.

[elephant]

When is she seeing a Lung Pulmonologist.

[Sangye]

Marta, many Weggies don't have sinus or upper respiratory involvement. I don't. I only had increasingly severe joint pain for about 8 months, then developed difficulty breathing. fatigue and severe anemia over the course of 3 months. I presented with lung hemorrhaging. A pulmonologist dx'ed me.

[misskay]

Mine began with a rash ( that I figured was an allergic reaction to something)... then within days I had a constant cough and hard time catching my breath, zero energy. One month later I was in Pulmonary ICU with acute respiratory failure... have her get to a GOOD Pulmonologist asap. Demand a chest x-ray.

[JanW]

I did not have lung involvement on presentation and don't now. Stenosis was my only symptom (going back to 2005) but it wasn't until I developed the saddle nose and started getting joint pains and problems with my feet that I knew something was really wrong. Still at that point, the pains and fatigue were never even as bad as a flu -- just felt run down.

[marta]

Thanks you guys, I've sent a link to this page to her to check out. I'm not sure when she's seeing the lung specialist, but I hope it's soon. They've already had her waiting too long in my opinion for somebody so young and healthy and with such sudden and severe symptoms.

I knew you'd come through for me.

[eileenv]

Hi Marta, sorry to hear about your friend, i hope she treated soon wheather it be wegs or not. I'm currently waiting for a biopsy of my nose, to get a diagnoses. I like the idea for your book when i went to the libary they had nothing on wegs. kind regards Eileen

[Sean48]

Hi marta

i started out with a cough for over a year and shortness of breath came more and more often. I used the excuse it was my weight and asthma (which I hadn't had a problem with for years).
Doctors said it was COPD. Then during the winter I blew my nose alot and my cough got worse. I had no sinus involvement other than that. The rash came last for me. Hope your friend only has a bad infection.....

[eileenv]

Hi Sean, i've not been on the forum latly (not well) still waiting for conformation of wegs do you mind me asking did they confirm your wegs with biopsy?. Kind regards Eileen

[Sean48]

Hi eileen.....
First of all I hope you are feeling better today. Yes they did diagnose me with the lung biopsy. They did so many tests on me, cancer TB .....brain, kidney, rash, mri's, cts, bone, bronoscopy (had that done at the beginning) tounge. They did a test on the fluid on my spine (I forget what its called at the moment). They didn't want to do the biopsy on the lung as it was so aggressive and my lungs well both large masses ect.....thank God they did it......Thats where it was found. If they didn't they would have treated me for a bad bad case of RA. I have a wonderful RA doctor and she kniew it wasn't RA causing the lungs to be like they were. So here I am today to talk about it......

[eileenv]

Hi Sean
Sorry to hear you have had such a rough time of things with this horrible wegs and hope with the meds that you are feelng better. No i'm not feeling very well at all while i wait for my biopsy i'm only on 7.5 of pred and plaqunil my Anca is pos and high crp and esr, hands are swollen and ulcerated lip and my tounge has become increasingly very sore and is now swollen i will go to dr's in the morning if no improvement. Kind regards, Eileen

[Sean48]

hi Eileen...I am doing really well now. I am on cytoxan and down from 60 to 40 mg of predinsone. when first diagnosed I did three days of 1000 mg of pred intervinous (sp). Today I went driving alone for the first time in 2 1/2 months. I felt like a new woman and it was like I had my independence back again....llike the song....I HAD MY RADIO BLASTIN AND THE WINDOWS ROLLED DOWN....It was great..... I really gave me a boost for sure. I hope after you get your results and get you on the right medication you will be as lucky as me and have no side effects. I have been blessed with that as so many of the others as you read, have had terrible times......Take care and let us know how you do. Sharon (sean48)