Dr Hellmann at JHU

**moyan** · 01-22-2010, 02:05 PM

Great, tree! We have all been waiting for just this kind of news! Now relax and smile

**onatreetop** · 01-22-2010, 02:10 PM

Thanks! It will be a long week to wait for Dr. Killmann but not so long I hope for labs.

**onatreetop** · 01-29-2010, 02:22 PM

Heard from the man this morning! He sounded very sure about his findings and then I asked him which scan he was reffering too? Now he has to check that the catscan was the oldest one with the noddles in the lung not the new that is clear. He 's said he needs to make sure than he will call back. He said was going to tell me to stop the cytoxin and start lowering the pred. and my mouth dropped. But then Dr. Hellmann said to wait until he calls me back. He believes that I might not have WG. After all this??? Noddles and ancr positive earlier. There was no biopsy then so he says might not be WG.

**elephant** · 01-29-2010, 11:38 PM

Wow, if it's not WG what would it be? I know there are some other autoimmune diseases that mimick WG?

**JanW** · 01-30-2010, 01:56 AM

Yes, depending on symptoms, sarc and relasping polychronditis (sp?) immediately come to mind. Those were the ones that matched me (saddle nose, SS, lung nodule) precisely.

**Sangye** · 01-30-2010, 02:15 AM

Onatreetop, I'm so glad you're at JHU. I wouldn't trust a regular rheumy's diagnosis. It'd be great if it's not Wegs. I don't know that much about sarc other than what I can research online. I do know RP pretty well and sure hope it isn't that. (It's even more rare than Wegs and has a very poor prognosis.) It's hard to know which to root for.... I just hope they diagnose you quickly and get you on the best meds. Please don't change any of your meds until you hear from Dr Hellmann, though.

**JanW** · 01-30-2010, 02:22 AM

Even my rheumy with his expertise was very quick to show me my lab results and very clearly lay out why he thought that a biopsy wasn't necessary in this case, even though it is considered the "gold standard." Since I have to have surgery anyway, they will examine the scar tissue from my SS to know for certain, but that didn't prevent him from starting me on meds. On the other hand, I do have the "classic triad" he says -- nose, throat and lung involvement.

**onatreetop** · 01-30-2010, 10:36 AM

He said something about Rhom . Arth. begining possible or the begining of WG. all I can do is wait for the call. I did schedule the local ENT biopsy and bone spur for my nose to be taken care of on the 9th of Feb. He isnt with JHU but it needs to be done. The spur explains the nose bleed on one side and bloody mucas while he is there he mite as well do the biopsy. Then we may REALLY know!!!! I dont have the nose yet but have been watching it change slowlywith weight and swelling. Oh the pain is not fun either.