Wegeners by default?

[Jennie]

Hello Everyone

I have been reading this forum for a month or so and decided to finally write. I may have this disease and I say by default as the doctors have ruled out everything else they can think of. My main symptom is my throat. I notice a few years ago that I was having a hard time swallowing and my voice was croaky. So off i went to ENT number 1, he ruled out reflux and sent me to ENT number 2. He took one look up my nose and down my throat and said he would love to fix my deviated septum ( didn't know i had one) but he had never seen anything like my throat. So off I went to ENT number 3, he did a biopsy and results were epiglottal "granulomatosis" but he did not know what was causing it. And so started my journey to different medical specialists. They ruled out Crohn's, Sarcoidosis, Amyloidosis, Tuberculosis etc. But my symptoms were not getting worse so I just went for regular checkups with the ENT.

In the meantime, i developed kidney stones. This has happened a couple of times but somehow they "magically" seem to disappear after a few months. Hmmm? Maybe they weren't kidney stones after all, they never did find a reason why I would have developed them but thats what the urologist and nephrologist said and I had never heard of Wegeners at that point so I didn't question. About a year ago, I developed another weird symptom...an area of skin hardening on my leg. I had that biopsied and was told it was just cell necrosis and would soften up and go away. Hasn't happened yet.

Back to my throat, my symptons started getting worse last summer and I had another biopsy in November with the same results. Different pathologists were consulted but all they came up with was "granulomatosis." And so I was referred to a 2nd Rheumatologist who mentioned Wegeners. He is not sure but has decided to treat my symptoms as such and see what happens. I am currently on Methotrexate, Prednisone and Folic Acid. I will see my ENT in a couple of weeks to see if the meds have made a difference and go from there.

Thank you for reading my story. This forum continues to be an inspriation to me.

Jennie

[HopeinTN]

I wish you the best of luck. This all sounds so familiar to me. I had most of these same symptoms (scratchy voice, kidney stones, skin rashes...) since my teenage years but didn't have anything checked out until it started causing lung pain which lead to finding spots on my lungs. After a lung lobectomy and biopsy, I have the answers we were looking for. I wish you well on your treatment and you have come to the right place. I'm still a newbie too and love this site.

Good luck!

[marta]

Jennie, I know that with your fighting spirit you will get your answers and overcome this thing that is plaguing you.

It was awesome meeting you at the ski hill and I look forward to a more meaningful chat next time you're up for a race.

Take care and keep up the fight, unfortunately it's the only way to get past this thing.

Big hugs.

[Nancy-S]

Welcome. Thanks for sharing your story. As we all know from finding this place, someone will search key words in your story and maybe, just maybe, it will help them too.

Reading through the forum has taught me so much. Because of the strength from the members here, I don't take "No" for an answer, easily. It also has given me knowledge to better direct my physicians.

I hope the meds help you soon.

[Sangye]

Hi Jenny, welcome to the group. While the kidneys can be involved with Wegs, kidney stones are not linked to Wegs at all. I don't know about the hard areas on your legs either, especially since the biopsy was negative. I get erythema nodosum (EN), which are hard nodules below the skin on my legs. They're quite painful and seem to get worse when the Wegs is more active. When some have reached the surface and ulcerated they biopsy as necrotic granulomatous tissue (ie, Wegs).

So all in all I'm not convinced that you have Wegs from those 3 symptoms you listed. I'd only consider one of them as possible Wegs.

[Al]

Hi Jenny,

A curious case you have. The throat symptoms do seem WG-ish, but the kidney stuff doesn't sound so clear. Stones, if that's what they are, are considered not related (they form by a chemical process, rather than a vasculitic one). In any case, granulomas in the kidneys are fairly rare, even with full-blown WG. It is hard to guess what your doctors will finally come up with for a diagnosis, but do let us know!

Al

[JanW]

Jenny - have the granulomas at this point made your windpipe constricted? Mine did and I needed to have surgery to correct this life threatening problem. So make sure that your ENT knows that your windpipe is normal sized now for certain and continues to scope you at regular intervals to make sure it's not closing up on you.

[Jennie]

Thanks everyone for your comments and concern. I continue to learn so much from this forum. While my kidney stones, if that is what they are, do sound like a separate issue, I am starting to keep track of any possible symptom I may have to mention to my Rheumatilogist when I see him next month. It seems like there are so many possible symptons related to Wegener's that symptons that I would normally have dismissed as not important, I am now staring to write down (for example, runny nose, fatigue, earache etc).

JanW, I will definitely ask my ENT about my windpipe. I do have sleep apnea and have a CPAP machine for nighttime. My husband actually recorded my breathing at night and I would stop breathing for 30-45 seconds at a time, numerous times per hour. The CPAP machine is definitely helping with that. I am sure this is related to my throat issues and I hope that someday I will not need to use the machine.

Jennie

[maria garcia]

Granulomatosis in the throat sound like wegeners. You never mentioned blood work. Have you been tested for Anca?

Welcome the the forum
ines

[Jennie]

Hi Maria
The only time that I know of that I have had ANCA tested was early in 2010 and it was negative. I will ask my rheumatologist about this when I see him in March as I think it is probably time for a retest. It is one of the many questions I have for him.
Jennie