User Tag List

Likes Likes:  0
Page 2 of 7 FirstFirst 1234 ... LastLast
Results 11 to 20 of 65

Thread: just diagnosed and got lots of questions!!

  1. #11
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by jsmith View Post
    i didn't realise hearing loss was so common, can it be fixed at all!! im so fed up with not being able to hear my children speak to me, i keep thinking it'll return, but ive not been able to hear since may :-(
    I know I've read on here about people losing their hearing and getting it back. I lost a good part of mine and am wearing hearing aids, and I may never get it back. It depends on the type of hearing loss and the amount of damage done by Wegs.

    I know that at least a couple people on here are seeing Dr. Jayne at Addenbrooke's who was mentioned above. Do a search on those names and you'll probably find some of their posts. Phil lives in Canada so I presume his doc from Birmingham now lives in Canada, too.

    You should still be able to see your ENT doc now that you are under a rheumotolgist's care. Most people have a team of docs, including the rheumy and pulmonologists, nephrologists, etc., depending on what parts of you are affected by Wegs. But I don't like the idea of them saying you were bothering them for nothing! Sounds like a good reason to find a new team. If you like your rheumy, but he's not a true Wegs specialist, perhaps he can consult with one who is, such as Dr. Jayne.
    Anne, dx'ed April 2011

  2. #12
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Jo, welcome to the group.

    Don't be afraid to ask as many questions as you like........your questions and everyones answers will go a long way towards helping someone else who is also newly diagnosed.

    I lost hearing in my right ear but it returned after treatment with pred. The best part for me about the hearing loss, was that if I went to sleep on my left side, I couldn't hear my husband snoring with the right ear

    Sneezing (about 30 times every hour) was one of the first symptoms for me, now I sneeze about ten times a day.

    I have heard very good reviews on Dr. Jayne at Addenbrook so if you can, you should ask for a referral to there........Freaky or Geoff would be able to give you more information.

    I am currently on 20mg of MTX and 5mg of pred. We are looking at trying to reduce the pred after I see my doc's again in December. I was told that I probably wont come off the MTX though......or not for a very long time.

    Take care of yourself and as always........
    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

  3. #13
    Join Date
    Jul 2010
    Location
    see map location in MN
    Posts
    4,374
    Post Thanks / Like
    Mentioned
    16 Post(s)
    Tagged
    0 Thread(s)

    Default

    Some here get their hearing back, or at least partly. Others benefit from getting hearing aids or surgical implants for cochlear implant or osseo integrated hearing implant which also restore a lot of hearing and can be a great improvement over being deaf. A good evaluation by a hearing specialist that can do both types of surgery is best way to find out what you need and what might help you the most. Good luck!

  4. #14
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    jsmith, my consultant is in my town in Canada. He worked in Birmingham for many years with Dr. Adou, Savage and Bacon. Jack, a long time member here that passed away, went to Birmingham. His doc was Adou. Adou is not retired but Birmingham is the best Vasculitis clinic in the UK if not all of Europe. I would try to get there at all costs.
    Phil Berggren, dx 2003

  5. #15
    Join Date
    Nov 2012
    Location
    united kingdom
    Posts
    17
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for that phil, i will do some research. I feel even worse today, i think its the reduction in the pred last week, i find it so frustrating that i cant get hold of anyone to get any help, i panic that pain = more damage to my nose and hearing. But there is no one available on the rhemetology phone number i have been given until tuesday, so not sure whether to go back to taking my 60mg a day of pred on my own, but i dont really want to mess with it!

    I am seeing my ent doctor in the morning, wish me luck, im so cross with the whole team but need to keep them on my side if i ever want to get any hearing back. i cant understand why it took them so long to diagnose me, i was admitted to hospital twice, had facial palsy and had every ent doctor in the hospital scratching their heads to what could be the problem. In the end they told me it was down to a deep routed emotional trauma and sent me out of hospital on anti depressants, telling me they were a new kind of pain relief, it was only when i read the patient information leaflet once home that i realised what they were!!

    Going off on a rant now, but better get it out of my system before i arrive tommorow!! but i had one doctor tear up a prescription for pain releif in front of me, telling me they see my 'type' all the time, trying to get hold of strong pain killers for nothing! ive not even been able to get a sick note!! my blood is boiling i feel like tracking down every medical professional i have ever seen and saying to them, see i told you i was ill!

    Anyway i will stop now as im only winding myself up,

    Thanks again all and wish me luck that i can at least get some hearing aids

    x

  6. #16
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    If you are anywhere near Birmingham, I'd take Phil's advice, not that I know anything, but I take his word for it. I don't think the doctors in a world class vasculitis clinic would treat you that way! And they'd probably hook you up with an ENT doc who has more experience and understanding about Wegs.

    I hope your hearing comes back, but if you need hearing aids, my experience with the digital over-the-ear ones has been good. I could not afford them here in the US so got donated used ones thru my ENT/audiology office. I had to pay some relatively minor costs. I would imagine it's a little easier in the UK; I hope so.
    Anne, dx'ed April 2011

  7. #17
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    Tell me about your pain and pred tapering regimen in detail jsmith. It is best not to adjust the pred on your own. Better to have your main Wegs doc always in the loop.

    That is insane what those ENT docs did to you. They down right lied to you.

    I'm sorry you have has such a bad run of docs. I STRONGLY SUGGEST that you get to Birmingham. I will ask my doc on the 21st which center you should go to.

    You can rant here all you want. That is a big part of this site. It helps you get things off your chest.

    Have you ever had your hearing tested? If so can you post a pic of your audiogram?
    Phil Berggren, dx 2003

  8. #18
    Join Date
    Nov 2012
    Location
    united kingdom
    Posts
    17
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi i looked into the vascuilits clinic in birmingham last night and got very excited theres a clinic that sees 300 of us each year, i definately need to go there, if you dont mind asking for me phill, i will see if i can get a referral from my GP. my consultant seems ok, she only has 3 of us tho in her remit and theres no accounting for experience, plus ive only seen her twice and the next time will be January, just leaves me feeling a little abandoned!!

    Phil my pred does was 60mg that i started on the 12th october, and this reduced to 50mg on the 8th November, and then i should reduce it to 40mg on the 8th December. The pain isn't too bad, doesn't warrant pain killers, but it is there, sinus and ear grumblings again. But i do think i am getting a cold, been saying that for a week now, but its not developing into anything more than a cough and runny nose.

    Ive not had a hearing test, as my ears have been discharging for the last 6 months, but that has stopped now, my son is deaf, (unrelated i hope!) and at his last audiogram i didn't hear a thing and i know they went up to 90db!!

    I will push for a hearing test today, i was laughed at when i asked if my hearing loss was permanent, so after 6 months i think they need to get moving so that i can have some hearing back, i manage day to day ok, but im an accountant, and people like to talk to me about confidential things, and it just cant be done!!

    Ive heard good things about the digital ones too, they are so expensive, but i have a friend who works in marketing them, and he said he may be able to get me a 'free sample' for use, that would be just fantastic if he could!

    Anyway, here goes to the hospital, will let you know how i get on.

    Thanks again all.

  9. #19
    Join Date
    Dec 2010
    Location
    Melbourne, Australia
    Posts
    2,751
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Good luck Jo,

    I think you will be on the right track now for, hopefully, a speedy pain free "new normal" with remission in your near future.

    We look forward to hearing how it all goes.
    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

  10. #20
    Join Date
    Mar 2009
    Location
    Swift Current, Saskatchewan, Canada
    Posts
    6,076
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default

    I will ask my doc for sure the exact name of the clinic he was at. I know he told me before but I forget. Maybe send me a message on the 19th or 20th to remind me.

    I would ask your doc if you can taper 5mg per week starting right now. That is also usually a faster and also safe taper as well.

    WOW! You didn't hear 90db at the test? Your hearing is very severe then. I would get a complete workup by an ENT right away including brainstem response testing.

    When I wore my hearing aids they cost me 5 grand in 2005.

    Please keep us posted.
    Phil Berggren, dx 2003

Page 2 of 7 FirstFirst 1234 ... 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
  •