Hi from NJ

**Alysia** · 11-04-2013, 06:22 AM

Originally Posted by pberggren1

We are all blessed in special ways.

I feel blessed to have so many amazing friends here

**tkd7** · 11-06-2013, 10:45 AM

My rheumy called today - chest CT scan normal. She referred me to a Dr. Robert Spiera at HSS in NYC. He's a WG specialist. Since my case is so puzzling she thought a second opinion made sense. It is a big peace of mind for me to get this second opinion. I know my PR3 result keeps coming back high likelihood of WG, but I don't want an aggressive treatment to chase a result of a blood test.

**pberggren1** · 11-06-2013, 10:50 AM

Keep Bob as your main doc. He is one of the top Wegs Experts in the US. He is very very good.

**tkd7** · 11-06-2013, 11:08 AM

Originally Posted by pberggren1

Keep Bob as your main doc. He is one of the top Wegs Experts in the US. He is very very good.

Phil, your note makes my day. I will sleep much better tonight knowing I'm seeing a big gun in WG to figure my case out.

**tkd7** · 11-06-2013, 08:24 PM

The only new symptom I seem to have is night sweats. Everything else is seemingly normal but I've been having night sweats the last few nights that awaken me and I have to get out of bed for 5 to 15 minutes before I can get back under the covers and try to fall asleep. The kind of night sweats where I can feel the dampness on my sheets.

**Pete** · 11-07-2013, 03:14 AM

I had night sweats at disease onset and again about a year later when I had a major flare. I'd wake up soaking wet two or three times at night and have to change clothes and bedding. This symptom went away once the meds kicked in. This too shall pass.

**annekat** · 11-07-2013, 05:49 AM

Originally Posted by tkd7

The only new symptom I seem to have is night sweats. Everything else is seemingly normal but I've been having night sweats the last few nights that awaken me and I have to get out of bed for 5 to 15 minutes before I can get back under the covers and try to fall asleep. The kind of night sweats where I can feel the dampness on my sheets.

For me, night sweats are an indication that I'm flaring. (That is, now that I'm past menopause and know it isn't that.) So I would take it seriously even if there aren't other new symptoms. I'm glad to hear you have an excellent doctor, one of the best, and that alone should relieve some of the stress. I admire your original rheumy for suggesting you get a second opinion from a top-notch doc. So many docs these days seem to have trouble admitting that they aren't perfectly capable of handling something rare and there might not be someone better for the job.

**tkd7** · 11-17-2013, 09:37 AM

I had my appointment with Dr. Spiera last Wednesday. I have to say it was the best doctor's appointment I've ever had. He spent the better part of an hour with me. He came into the exam room with my records but made a point of telling me that he hadn't reviewed them, that he prefers not to be influenced before meeting with a patient for the first time. He let me tell my story, took copious notes, and I could tell that he took in every detail. Then he excused himself to review my chart in his office, even came in to see if I had some records that my first rheumy hadn't sent over. After that he examined me and then he invited me into his office for his first thoughts. His exam, both questions and physical, were more thorough and pinpointed than my first rheumy.

He told me that cases like mine are his most difficult. Treating healthy patients is much more difficult than sick ones. He told me that 20 years ago I never would have had this diagnosis or been in his office. He thought that if I had a blood test 2 years ago it probably would have been PR3 positive. But now that I have peripheral neuropathy, it is considered a serious symptom. in the case of GPA, peripheral neuropathy can degenerate into motor neuropathy, which is extremely serious and we want to make sure that doesn't happen. When he learned I was a chemical engineer he started discussing the specifics of the blood test methods with me. His recommendation is that I have the biopsy of the sural nerve in my leg. It showed it was impacted in my conduction study, so that makes it a good one to test, as well as the fact that the physical impact is negligible. Biopsy of an upper extremity nerve has much greater complications. If the biopsy shows GPA, then he recommended rituxan therapy. If there are no signs, he suggested we wait 3 to 6 months and then redo the conduction study to see if there is a change in the neuropathy. Then he said he had to think about my case some more and wouldn't complete his diagnosis for a couple of days, he wanted to consider it a bit longer. Then he apologized for being a little late to my appointment and thanked me for being organized. He said that in my case the therapy would probably be all that I need and that he thought it would be unlikely that it would be a recurring issue after treatment.

I really appreciated that he treated me like an intelligent person, checking for my understanding many times during our conversation and really taking me through his thought process much closer than my original rheumy.

I meet my neurosurgeon this week to prepare for the biopsy and then we'll see what is next. My stress level has greatly improved, getting a good night's sleep every day and generally upbeat about whatever comes next. I feel like I have a good medical team in place and if something does drastically change I can get it addressed quickly and correctly.