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My husband was diagnosed with Wegener's last November. We had three children prior to his diagnosis. When he wasn't improving after Rituxan treatments, we traveled to MA and the team of MD's there...

My husband was originally on Bactrim and got a rash and was taken off. He has been on Mepron (generic atovaquone) for quite some time. We have new insurance and each bottle of Mepron costs us...

First, I apologize because I know you said "men only", but I had a feeling it was going to be prostate-related and I was correct! This is how my husband's WG manifested. It is so rare and unusual...

Through some wonderful friends and their connections, we were able to get my husband to Mass General to see Dr. John Niles. For the first time since diagnosis I feel that we are finally headed in...

We are in Trumbull, CT. So, Boston is much closer for us. The Rheumatologist doesn't think there is anything in NY.

Marylz, So sorry you broke your leg. That has been a major concern for me with my husband - that he will get injured. Whenever he says he feels dizzy, I immediately tell him to get on the floor.

Hi Pete,

He has to go to Yale for Pulmonary Function Tests before his rheumatologist will give him a referral to Boston or Cleveland. And although it takes the Rituximab the 4-6 weeks to take...

I posted yesterday about my husband's dizziness, double vision, blurred vision, and balance. He was in the ER yesterday and they admitted him. The MRI showed what they are calling a small stroke. ...

Update - he is still in the ER. He had a CT Scan and they just sent him for an MRI. The MD who examined him asked me about his face (his right eye is sunken in and squinty and his left eyebrow...

Hi Phil,

The ENT said the ear drums looked normal. And the audiologist who performed the hearing test and the test to try to "induce" that dizziness said everything was completely normal. My...

My husband was diagnosed November 19, 2013. He had 4 infusions of Rituxan and is on Prednisone and Methotrexate and the Bactrim 3x a week. He passed out once in the shower two days after his 5 week...

Debra, I was thinking of you today. I spoke to a woman with WG who said just what you said: "why can't you go to Boston?". She sees Dr. John Stone at UMASS General. It seems that a 2 hour 45 min...

My husband saw his rheumatologist yesterday and she wants him to travel to the Cleveland Clinic. I am not sure how we will afford this trip or if he will physically be able to make this trip.
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As I mentioned, we have 3 children ages 4, 2, and 7 months. The 7 month old is home with us as I am still breastfeeding and need him home at night with me. Then in the daytime he goes to my parents...

I am having an extra anxious day. I was going to include that in my post this morning but didn't because I was hopeful it would pass. But, it has not. Hubby had a bad night. His coughing was very...

Hi Kim,

Thank you for the information. We are in CT also (Fairfield County). When my husband improves, we can look into NYC and/or Boston. Thanks again!

Don, you are truly awesome! As is everyone else here. You all make me hopeful that it is possible that my husband will return to work, the golf course and playing with the children :rolleyes1:

Don, I saw that you were on your couch for 6 months before feeling right. What was the status with your job? My husband works for a small company that does not have short term disability. His...

Thank you so much Don! Receiving your message has definitely provided me with a feeling of hope after much anxiety. My husband is taking 60mg of prednisone daily. He has had 2 rtx treatments and...

My husband has been extremely ill since the end of September. He was having a lot of pain in his pelvis and prostate. The urologist began by ruling things out - no kidney stones, no bladder or...