User Tag List

Likes Likes:  34
Page 1 of 2 12 LastLast
Results 1 to 10 of 11

Thread: Just Diagnosed 13/12/18.

  1. #1
    Join Date
    Dec 2018
    Location
    Darwin, Australia
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Just Diagnosed 13/12/18.

    Hi,

    My name is Suzanne and I was recently diagnosed on 13.12.18. It was a big surprise but in a way, a relief.

    I am a type 1 diabetic and was diagnosed with the disease at the age of ten. Diabetes can be a pain in the ass but so can lots of things and on the whole, I have coped well with it. I've always made the diabetes fit in with my life, not the other way around.

    The first symptom of Wegeners (GPA) for me was ear infections that would not clear up. My hearing was getting worse and worse in both ears and I had a horrible discharge. The ENT initially diagnosed me with CSOM with Cholesteatoma. I had an operation in November 20108 to remove the Cholesteatoma however, when I went back to see my ENT after the operation, he informed me that the biopsy taken from my ear showed dead tissue and possible signs of GPA. I already have only 22% kidney function which was thought to be due to my diabetes but now not so sure.
    Further blood tests, Urine samples, Chest Xray were done. ANCA readings showed that GPA was the diagnoses. Thinking back, I had bad blood noses at Christmas time last year with bright red blood and clumps of blood. I also started to lose weight suddenly without trying. Didn't think much of it as I live in Darwin Australia and it's very hot at the moment so just thought I was eating less. The loss of hearing was bad enough, but then I had a pounding head and I was told to go to the hospital immediately.


    I have now been put on antibiotics and steroids and I had the best sleep I have had in about 6months. My ears have dried up a bit, still can't hear well but no pounding head. I have a lot more energy. Finally some relief. Unfortunately the steroids throw raise my blood sugar levels which are usually pretty good. I now have to monitor even more closely so that's an added complication but on the whole, I feel better.


    Just wanted to say Hi and try and gain more information as I know with my diabetes, having others that understand and can relate makes a huge difference, especially in the tough times. So glad I found this forum.



    Suzanne

  2. Likes bobjannj, Pete, annekat, drz, Alysia liked this post
  3. #2
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,698
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Suzanne and welcome to the best forum around, if you find yourself unlucky enough to be here that is.

    Great to see another Aussie, although I'm so sorry that you have received a GPA diagnosis.

    If you are on facebook, we have an Oz/NZ group that you are welcome to join. It is only open to people from Australia or New Zealand, because of the different medical systems that we have, compared to our overseas friends. I have put the link below.
    We even have a couple of people from Darwin. I'm glad the NT are starting to recognize the symptoms.

    Unfortunately for a lot of people, diabetes becomes part and parcel of GPA/prednisolone life.
    Hopefully you can find a way to fit both GPA and diabetes in to your new daily routine.
    I'm glad you are starting to feel better.

    https://www.facebook.com/groups/516643745050360/

    Take it easy
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  4. Likes Alysia, annekat liked this post
  5. #3
    Join Date
    Dec 2018
    Location
    Darwin, Australia
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Michelle,

    Thanks so much for your message. Yeah, you have to be very careful when researching GPA and ensure you're on an Australian/New Zealand website and not American as it suddenly doesn't make too much sense due to the differences in the way we do things and some of the names etc.
    I'll certainly have a look at the facebook page. The more info the better.
    I'm feeling pretty positive as I feel like something is being done now and things are happening. Things were just getting worse and worse. I'm on the up now so happy days.

    It's hit and miss in the NT with anything medical as the population is very transient. I think I have a good doctor but time will tell and if not, may move back to Melbourne as a bigger place with more choice and I know the Austin hospital in Melbourne is very good with Vasculitis.

    Thanks again.

  6. Likes mishb, Alysia, annekat liked this post
  7. #4
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Suzanne. Greetings from Alaska and another victim of this strange illness. My presenting symptom was also sudden hearing loss, initially treated as an infection. This was followed by terribly nasal crusting and nosebleeds. Fortunately I was diagnosed relatively early (several years ago) and to date I have no vital organ involvement.

    Good that you are getting some immediate relief. No doubt you will be put on another drug to induce remission once the prednisone has banked the flames.

  8. Likes drz, Alysia, annekat liked this post
  9. #5
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,109
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Quote Originally Posted by Suzanne View Post
    Hi,

    My name is Suzanne and I was recently diagnosed on 13.12.18. It was a big surprise but in a way, a relief.

    I am a type 1 diabetic and was diagnosed with the disease at the age of ten. Diabetes can be a pain in the ass but so can lots of things and on the whole, I have coped well with it. I've always made the diabetes fit in with my life, not the other way around.

    The first symptom of Wegeners (GPA) for me was ear infections that would not clear up. My hearing was getting worse and worse in both ears and I had a horrible discharge. The ENT initially diagnosed me with CSOM with Cholesteatoma. I had an operation in November 20108 to remove the Cholesteatoma however, when I went back to see my ENT after the operation, he informed me that the biopsy taken from my ear showed dead tissue and possible signs of GPA. I already have only 22% kidney function which was thought to be due to my diabetes but now not so sure.
    Further blood tests, Urine samples, Chest Xray were done. ANCA readings showed that GPA was the diagnoses. Thinking back, I had bad blood noses at Christmas time last year with bright red blood and clumps of blood. I also started to lose weight suddenly without trying. Didn't think much of it as I live in Darwin Australia and it's very hot at the moment so just thought I was eating less. The loss of hearing was bad enough, but then I had a pounding head and I was told to go to the hospital immediately.


    I have now been put on antibiotics and steroids and I had the best sleep I have had in about 6months. My ears have dried up a bit, still can't hear well but no pounding head. I have a lot more energy. Finally some relief. Unfortunately the steroids throw raise my blood sugar levels which are usually pretty good. I now have to monitor even more closely so that's an added complication but on the whole, I feel better.


    Just wanted to say Hi and try and gain more information as I know with my diabetes, having others that understand and can relate makes a huge difference, especially in the tough times. So glad I found this forum.



    Suzanne

    Sorry to hear you have to join our group but glad this resource is still avilable to help you. I have found it very helpful and supportive although many of the early users I got to know through this forum are gone. Much of their wisdom still lives on in posts from years ago and some times quotes from the past show up again. You can search the older posts too to find information about specific topics that are not being currently adressed.

    My history is very similar to yours with type 1 diabetes for years, loss of hearing and several surgeries in left ear for cholestoma decades ago, and Wegs for past decade. I got a BAHA six years ago after Wegs took the hearing in my good ear and balance too in 2010. It also caused more kidney damage as well as lung damage from Wegs which added to the kidney damage and neuropathy I already had from years of diabetes. Wegs also made my neuropathy worse too. I started having nose bleeds too this year again but bloody nasal crusting was one of the early signs of Wegs before I was finally correctly diagnosed along with scleritis, roving joint pain, fatigue, weight loss, and blood in my urine from kidney damage. I went into the hospital initially with a misdiagnosis of pneumonia which was actually Wegs attacking my lungs and suspected broken arm which turned out to be joint pain and suspected bladder infection which actually was Wegs activity in kidneys. After my treatment for Wegs my nasal crusting reduced, joint pain decreased, kidney and lung function improved, and the pains in my feet for suspected plantar fascitis went away.

    My diabetes causes more stress and work for me than Wegs as it is something you have to attend to every few hours. I am on Omni Pod insulin pump now and Dexcom G6 CGM which really help monitor my blood glucose levels. I like being tubeless from an insulin pump but don't like having to change the Pods every 36 hours. Of course the prednisone maintenance meds also has a negative influence on my blood glucose levels. I have also been on AZA for maintenance for 8 years.
    Last edited by drz; 12-18-2018 at 05:16 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. Likes mishb, Suzanne, Alysia, annekat liked this post
  11. #6
    Join Date
    Dec 2018
    Location
    Darwin, Australia
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Drz,

    Thanks for your message. I think now I know what it is, I feel like I can start taking control. A lot of the battle is being told different things by different people. none of who actually KNOW. It took me a long time to find an excellent endocrinologist for my diabetes but once I did, made a world of difference. I'm hoping I can do the same with Wegs.
    I've always travelled a lot and never let illness run my life and I don't want to start letting now.
    I know it's just the beginning and my meds will probably change a bit as I've only just started but I really want my hearing to get better so I can be in a room with lots of people and not feel completely isolated. I may need to get a BAHA too. Don't want to, but not much option. How is your hearing with the BAHA?

    Suzanne

  12. Likes Alysia, annekat liked this post
  13. #7
    Join Date
    Dec 2018
    Location
    Darwin, Australia
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Alskatom,

    Thanks for your message. It's really great to hear other peoples experience with GPA and know that you're not going insane or a hypochondriac.
    I don't like being the person who always has some illness but it's hard to hide when you lose hearing and weight, people tend to notice.

    Yes, I think there will definitely be some shuffling around of medication as I've just started on initial dose so it's trial and error at the moment but so far so good.


    Thanks
    Suzanne

  14. Likes Pete, Alysia, annekat liked this post
  15. #8
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,109
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Quote Originally Posted by Suzanne View Post
    Hi Drz,

    I know it's just the beginning and my meds will probably change a bit as I've only just started but I really want my hearing to get better so I can be in a room with lots of people and not feel completely isolated. I may need to get a BAHA too. Don't want to, but not much option. How is your hearing with the BAHA?

    Suzanne
    Before getting the BAHA my hearing was more limited. Social interactions were very difficult since I often had to ask people to repeat things and I missed a lot of any group conversations. Trying to attend any plays or lectures was usually frustrating because of poor hearing and and missing a lot of what was said. My speech deteriorated which I learned later was normal in deaf people. Many studies indicate that hearing loss causes more isolation than vision loss although both are major handicaps. People tend to make more allowance and are more helpful to people with loss of vision.

    Getting the BAHA was a major life changer for me and seem to improve my hearing to about what I think is 50% of normal where I have about 10% without it when using only my regular behind the ear hearing aid in the one ear with some hearing. The BAHA transmits sound from my deaf ear side through my skull to the inner ear on the other side where there is some hearing remaining. I have lost some frequencies but those for normal voice seem generally OK at inner ear level. You need a good audiology exam to find out if a BAHA will actually help you.

    I still miss a lot in group conversations and noisy environments are especially hard when wearing a hearing aid. The newer digital ones are much better than a few decades ago but still no match for normal good hearing which many people enjoy. One great improvement for me was getting a a TV streamer and portable microphone which beam sound directly to the hearing aids. I can use the portable mic in situations like an exercise class or when having dinner in a noisy restaurant with a few people. My speech also improved almost back to my normal speech before the loss of hearing from Wegs. My hearing was very impaired for over two years until I got the BAHA.

    I had to be in remission for a year before surgery would even be considered. Then I had to find a surgeon to do it. Mayo Clinic wouldn't do at Medicare rates so I had to go to U of MN Hearing Clinic for the surgery. They now have less invasive methods for installing a BAHA by making a small slit and then inserting a magnet that holds the BAHA in place. Less risk of infection and faster healing. There are more surgeon too today that offer this procedure so I suspect it is also a lot cheaper than the 50-60 thousand charge for the procedure used on me. The one down side of the magnets is no MRIs unless the magnet is removed. I have had three MRI's last year so the older procedure maybe worked out better for me. I don't know if it would be very difficult to remove the magnet for a MRI since they now have a implanted CGM inserted into your arm to measure your Blood Sugar that is replaced every few months.

    I have had a regular hearing aid in my ear damaged by recurrent cholesteatoma for a few decades. As people age it is normal to see deterioration in vision and hearing so glasses and hearing aids often are the norm in a senior population. Since I now live in a senior housing complex my limited hearing is not unusual and some other residents are more impaired in their hearing than I am now with my hearing aids so I am about average for our population.
    Last edited by drz; 12-21-2018 at 07:06 AM. Reason: To add extra information and clarify post.
    Knowledge is power! Wisdom is using it to make good decisions!

  16. Likes Pete, Masha, Suzanne, mishb, gilders, Alysia, annekat liked this post
  17. #9
    Join Date
    Jul 2014
    Posts
    294
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Suzanne, regarding BAHA, there is an external, i.e. not implanted device called the SoundArc made by Cochlear. It is generally offered as a "demo" of how you might respond to the implant, but can be used long term. It's not perfect, but I am happy with it for now. It's made a big difference in my daily life. And, as Drz noted, a surgeon would want to see you in a stable remission for some time before considering an implant.

  18. Likes Suzanne, Alysia, annekat liked this post
  19. #10
    Join Date
    Dec 2018
    Location
    Darwin, Australia
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Just Diagnosed 13/12/18.

    Hi Alaskatom,


    Yes, I was thinking that might be the case. The soundArc sounds like something I would benefit from greatly. I'll definitly ask my ENT about this.
    Really appreciate the feedback and advise as feeling pretty good now but just need the hearing improved so I can get back to work.

  20. Likes annekat 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
  •