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Thread: Wegener's specialists in the southeast?

  1. #21
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    No and that has been my complaint to all of my Dr's....I've been on the meds since 11/8 and don't see a single Dr until Dec 9th! Is that too long? I've tried and tried to get in earlier and even on cancelation list. Before I left the hospital, the hospital is the one that made all of my appointments

  2. #22
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    Quote Originally Posted by Hakmanson View Post
    No and that has been my complaint to all of my Dr's....I've been on the meds since 11/8 and don't see a single Dr until Dec 9th! Is that too long? I've tried and tried to get in earlier and even on cancelation list. Before I left the hospital, the hospital is the one that made all of my appointments
    I wouldn't be happy with that scheduling. I left hospital after two day stay on Nov 17th and have one follow up set for Nov 29. I was also refered to another specialist and contacted her this morning and saw her this afternoon. I did have to cancel my appoinment with my rheumatologist on 17th while in hospital and it is rescheduled for Dec 8. However he is monitoring my lab results every three or four days and adjusting my meds as needed so I feel comfortable that I am am being followed adequately.

    Is there anyone to help you that is good at working the system?

  3. #23
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    Hakmanson, I hope you were able to call either the kidney doctor or rheumatologist ( the one that your going to see) and leave a message with her nurse. They are nice there.

  4. #24
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    Hello fellow WG
    This is the first time I'm actually doing anything like this. I've been embarrassed about being sick. I was a nurse and it definitely has changed my life. I spent the whole summer in the hospital here in cape Girardeau mo with lung nodules they didn't know what it was and put me in isolation for over 18 days it was horrible. They finally did a lung biopsy and sent it to the Mayo clinic who diagnosed me with WG. The doctors then transferred me to Barnes to Dr. Parks who then did her own testing and finally agreed with the Mayo clinic. For my 26th bday I started my first round of chemotherapy cytoxin which made my bladder bleed so that was about a month meanwhile she increased my dosage of prednisone from 20mg upto 60mg as well as starting me on imuran which affected my kidney function after a week I couldn't void it was horrible. And the prednisone completely made me a different person it changed my personality I was angry all the time. I hated God. And I was angry at my family cuz I'm the baby and spoiled and was used to being protected and then being able to make it better. My mom is a nurse as well so this has been hard on her. But I completely changed I went into s downward spiral I hated everything and everyone for taking everything I worked for I went from being in charge of everything in my life to having no say. While on prednisone I broke the law I was writing bad checks and I got into trouble and got put on probation. That didn't wake me up I was still angry with God and didn't care about living anymore. So I continued my self-destructive ways and ended up in prison. While destroying myself the doc put me on rituxan it helped my lungs I no longer needed my oxygen tank it's only prn now. When I went to prison they took me off all my meds and my anger and hate levels went down. I had night terrors coming off the steroids. And my moon face went away and the 80lbs I gained went down I've lost 30lbs I'm still working on the other 50. But I no longer hate God and I've began to accept being sick. I felt like I could finally see and think clearly and normally after being off the prednisone. The physiologist said I had a serve bad reaction to the medication. I will never take it again I even want to advocate for infants being tested at birth for autoimmune diseases. I feel knowing at the beginning would have prevented a lot of my pain. And if I can help prevent others from the pain I will. Anyways I am now having serve sinus infections and my ENT a wonderful dr. He believes it's the WG. However my rheum dr believes I only have WG in my lungs and has only given me 3 dosages of rituxan and does not seem to have a treatment plan for me. She says that there are no treatment plans for ppl with WG because it's so rare. So I'm thinking I need a specialist because she doesn't want to listen to my concerns or my ents concerns. I feel she treats me differently bc I went to prison my other doctors know and they are understanding and I go to therapy and I'm in s better state of mind but I she makes comments like I've never had the cops call me like she was embarrassed that a patient of hers was in jail. She is the head of the dept but when I was in nursing school I as taught and promised to help even a murderer without judgement. I have paid for my mistakes. But I also feel she should have noticed my irrational behavior I would throw med students out of the room and scream at them. I was horrible. She will now admit to me not being suitable for prednisone but it took me completely losing my mind and myself and another doctor telling her that. I have a hard time meeting new doctors I have trust issues because I had so many of them come and look at me like a lab rat when I was in the hospital. I feel I should get a second opinion from a specialist but I'm just scared that they will be worse. So I guess I'm asking if I should stay with her or go to a new doctor ???
    Thanks
    Amy


    Sent from my iPhone using Tapatalk

  5. #25
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    Welcome Amy, glad you found us, you'll find much help, caring, and advice on here. You definitely need a 2nd opinion. And, you need to make sure your docs know WG/AI diseases. If they don't, they are reading out of a book and you are their guinea pig. They can consult Vasculitis centers all over the world if they want...you need to ask them if they are. NO guessing here, it's a guessing game anyway cuz docs don't know this disease. Also, you need to put this note on the Forum under newbies! Thanks, and best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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