Could this be WG?

[Jackie]

Hello All

Hope you can help. Firstly how would you describe the pain of WG, would this include fleeting neck pains?

It would appear that my docs cannot diagnose what my problem is. These problems started in 2004 which included: nasal crusting, nasal crusts which lodge under my uvula, regular hoarseness, post nasal drip and a nasal ulcer in 2008 and now fleeting pains throughout my hole body. ANCA tests have proved to be negative. SED rate elevated on two occasions. No evidence of inflammation on CT scan of sinuses.

Recent tests included: a upper endosopy which was clear and a septal biopsy which showed evidence of ulceration. Nerve studies were negative.

I have a number of unexplained symptoms such as pins and needles in certain parts of my face and buring in my nose which comes and goes.

Have no idea what do at this stage. I would appreciate your help.


Jackie

[pwc51]

The pain I had prior to diagnosis was generally isolated to individual joints. Ankle one day, wrist the next etc. I would be fine in the morning with the pain developing during the day until by the evening it was usually unbearable.

I hope this helps?

[Jackie]

Hi pwc51

Many thanks for your help.

Jackie

[JanW]

Roving joint pain could certainly be a sign of WG, as could the nasal crusting. It could also be associated with other vasculitis diseases such as Churg-Strauss, but you don't mention asthma or shortness of breath.

[Jack]

Wegener's is such a difficult disease to diagnose because everyone presents with different symptoms. In general, the body pain people experience is confined to joints and feels just like rheumatism, but other common symptoms are nasal crusting / bleeding with sinus pain, skin disruptions and eye problems. Then of course there are the more serious symptoms such as renal failure and lung problems.

ANCA tests do not mean that much, but if you have sinus involvement a biopsy might prove something.

[Jackie]

Hi JanW

Thanks for your response. I have no asthma or shortness of breath, thankfully. Just looking for a answer after six years. Hope to get one soon.

Jackie

[Jackie]

Hi Jack

Thanks for info. My pain moves, I can have it in my fingernails then in my fingers and then I can have it in my neck or leg, very strange. Thankfully no renal or lung problems.

Jackie

[drz]

The pain I had prior to diagnosis was generally isolated to individual joints. Ankle one day, wrist the next etc. I would be fine in the morning with the pain developing during the day until by the evening it was usually unbearable.

I hope this helps?

Is this pretty typical. I had same thing. In hind sight it seems like the doctors should have been able to recognize these symptoms as typical of Wegner's cause they don't happen that often with other diseases, do they? I never could figure out what medical problem would have you go to bed with a sore knee and then wake up with a sore shoulder and neither could several doctors.

[Sangye]

drz, Unfortunately migrating joint pain isn't unique to Wegs. Many diseases, conditions and imbalances can cause it. With that symptom alone, no doctor could be expected to guess Wegs.

Jackie, have you been evaluated by a Wegs specialist? That's where I would start.

[elephant]

Jackie, I agree with Sangye. You definitely have something brewing.

[Jackie]

Thanks for the advice Sangye. At the moment I am working my way through multiple specialists.

Elephant I'm with you, I think there is something brewing.

Jackie