User Tag List

Likes Likes:  44
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Thankful to find this forum

  1. #1
    Join Date
    Jul 2020
    Posts
    12
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Thankful to find this forum

    Hey Folks,
    After 2 1/2 years of misdiagnosis, I was diagnosed in February with possible vasculitis, then confirmed for GPA in May. It started with what was thought to be pneumonia, which turned into the worst joint pain I've ever experienced which was thought to be some sort of reactive arthritis. From there constant issues with losing my voice, pain in my lower back which was basically dismissed by doctors since there were no stones or bacterial positives. My eyes lit up so red that I looked like something possessed. Then came odd rashes on my hands that would crop up anytime I caught a cold or felt off. I had several respiratory things crop up along the way, all the while being misdiagnosed and thrown on some sort of antibiotic and Prednisone. I've never been a sickly type of person, I always recovered from something within a 2 to 3 day period. I finally stood my ground and knew something was off, told the doctor to re-review the last two years and the horrible joint pain I was constantly having. He sent me to an RA that took some tests, luckily during that time a bad purple rash appeared on my legs that tipped off the RA.
    Anyways, the RA got me into the appropriate facilities that re-tested and confirmed, they put me on Rituxan in June, still waiting to see how it works. During this time I've been honestly rather scared and tripped over this web site. I can't thank you enough for the past posts and how much they have helped me understand and calm my nerves just a bit. It's been a rough ride the last 2 years, 2020 has added to that, I'm still betting Alien invasion is next on the wheel of what the hell is next. Anyway, just wanted to say hello and again thank you.

    Dave

  2. Likes drz, Arleta, marta, annekat, Aneinu, Alysia liked this post
  3. #2
    Join Date
    May 2008
    Location
    Canberra, Australia
    Posts
    1,539
    Post Thanks / Like
    Mentioned
    31 Post(s)
    Tagged
    2 Thread(s)

    Default Re: Thankful to find this forum

    Hi Dave
    Thanks for joining and very happy that you got help from previous posts. Good to see. You've certainly had a long couple of years going through all that. Well done on insisting on a review. hopefully you don't have to do that too often.

    Will be keen to see how the Rituxan works for you. Seems to be a great drug for many. I have no personal experience with it but seems to be great

    Also - sorry your post got automagically moderated. Nothing personal

    Welcome!
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  4. Likes Aneinu, Alysia liked this post
  5. #3
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,223
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    @DStaelens

    Welcome to the “club”, Dave. Hope the rituximab proves to be an effective therapy for you. Reading through your symptoms, I thought that there are many folks on here who can relate. The search facility here is good, so you can find others who have dealt with symptoms similar to yours.

    If you don’t mind my asking, where are you from? Where are you getting treatment?

    Keep us posted. Good luck!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. Likes andrew, Aneinu, Alysia liked this post
  7. #4
    Join Date
    Apr 2010
    Posts
    860
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Welcome to our hang out Dave. It's a great place for information and the company of people with similar experience. There has never been a better time to have Wegener's. (Gosh, that sounds like I am trying to encourage people to get WG. -- But wait, there's more...)
    Rituxan was a big step forward and now there is another medication soon to be available that many are thinking will be another revolution of treatment- Avacopan. Of course, being the new kid on the block , it is not a certainty. But a very good reason to hope.
    Some people , like myself , have used up the other options over the years and this new medication is even better news for US.
    My rheumatologist is expecting Avacopan to be really good news for all of us.

  8. Likes andrew, Aneinu, Alysia liked this post
  9. #5
    Join Date
    Jul 2020
    Posts
    12
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Thanks, and no worries, no offense taken. :-)

  10. Likes andrew, Aneinu liked this post
  11. #6
    Join Date
    Jul 2020
    Posts
    12
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Quote Originally Posted by Pete View Post
    @DStaelens

    If you don’t mind my asking, where are you from? Where are you getting treatment?

    Keep us posted. Good luck!!
    Thanks Pete, from upstate NY between Utica and Syracuse. Getting treated at Upstate medical. They have been fantastic.

  12. Likes Pete, Aneinu liked this post
  13. #7
    Join Date
    Jul 2020
    Posts
    12
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Thanks me2, that sounds exciting, will look into that tonight. :-)

  14. Likes me2, Aneinu liked this post
  15. #8
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    88
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Glad you're here and in the right path.
    I was also misdiagnosed 4 times before I finally got the right doctor. So incredible lucky this ordeal took only 5 weeks.

    I did go back to see all those doctors that misdiagnosed me.
    Brought brochures, gave them some Weg training and made sure they know about the missed opportunity to be a hero and how important it is for them to be on the lookout for patients suffering from autoimmune disorders.

  16. Likes me2, drz, Masha, DStaelens, Aneinu, Alysia, Ljj liked this post
  17. #9
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,202
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Hi Dave,

    I feel absolutely the same about this forum.
    I got diagnosed in 2010, and my first foray into Wegener's was a Facebook page, but I absolutely hated it as it felt like a 'who has it worse contest'.... not my scene.

    I found this forum, and it was the best thing that happened in my early days. I made friends, I got support, it was non judgemental, and everyone sincerely wanted to help.
    I was told things I didn't want to hear, but it was those things that finally pushed me to seek a new doctor who wasn't using me as their WG schooling project.
    Because of the people on here, I was convinced to look for a better doc, and found the best doc. IMHO she's truly the best.
    Because of finding said doc, and also the openness of the people on this forum, we ended up publishing a paper in a French medical journal showcasing the power of the patient driven research, and how close it is in its findings to expensive researcher driven research.

    This forum truly is a magic place where good things happen and great people hang out.

    I wish you success with treatment, easy collaboration with docs, and joy in life.

    marta

  18. Likes drz, Pete, Masha, DStaelens, me2, Aneinu, Alysia, mishb liked this post
  19. #10
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,981
    Post Thanks / Like
    Mentioned
    18 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Thankful to find this forum

    Quote Originally Posted by DStaelens View Post
    Hey Folks,
    After 2 1/2 years of misdiagnosis, I was diagnosed in February with possible vasculitis, then confirmed for GPA in May. It started with what was thought to be pneumonia, which turned into the worst joint pain I've ever experienced which was thought to be some sort of reactive arthritis. From there constant issues with losing my voice, pain in my lower back which was basically dismissed by doctors since there were no stones or bacterial positives. My eyes lit up so red that I looked like something possessed. Then came odd rashes on my hands that would crop up anytime I caught a cold or felt off. I had several respiratory things crop up along the way, all the while being misdiagnosed and thrown on some sort of antibiotic and Prednisone. I've never been a sickly type of person, I always recovered from something within a 2 to 3 day period. I finally stood my ground and knew something was off, told the doctor to re-review the last two years and the horrible joint pain I was constantly having. He sent me to an RA that took some tests, luckily during that time a bad purple rash appeared on my legs that tipped off the RA.
    Anyways, the RA got me into the appropriate facilities that re-tested and confirmed, they put me on Rituxan in June, still waiting to see how it works. During this time I've been honestly rather scared and tripped over this web site. I can't thank you enough for the past posts and how much they have helped me understand and calm my nerves just a bit. It's been a rough ride the last 2 years, 2020 has added to that, I'm still betting Alien invasion is next on the wheel of what the hell is next. Anyway, just wanted to say hello and again thank you.

    Dave
    Welcome, Dave! So many things sound familiar about your case and others don't, or I didn't have all the same symptoms like rash on the legs, though I knew about them from this forum. After 9 years I still find others' cases interesting in that they are all somewhat different and each has something to learn from. I hope we continue to hear from you on a regular basis, and stay safe!
    Anne, dx'ed April 2011

  20. Likes DStaelens, Aneinu, Alysia liked this post
Page 1 of 2 12 LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •