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Thread: just diagnosed and got lots of questions!!

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    Hi very positive at the ENT today, first time ive seen him since i got the results and he was very apologetic about the previous treatment ive received. I have had my hearing tested but was unable to get a copy of the audiology report, they dont like giving you medical records!!

    My hearing loss is classed on the higher moderate loss scale, between 75 and 60 decibels i responded too, which is a slight improvement on before! my cochlear bits all were normal so its just a problem with the sound getting into the ear, (im not sure of all the technical terms!)

    Im having some lovely nhs hearing aids for the time being, but my ent man has sugested some bone anchored aids as my ears are still pretty raw inside from the infections and operations that i have had and bone anchored ones i could still use with a flare up, he said the op was relatively minor (if you ignore screwing titanium screws into my skull!!) i know nothing about bone anchored aids, but i am meeting with him after xmas to discuss these again with him, and to monitor all my other ENT bits and treatment ive been having.

    Still taking my 50mg of pred, and waiting for the rhumetologist to get back to me! 5mg reduction sounds much better to me, i know last time i was on them for my palsy the I was weaned 20mg a day every three days and it hit me like a brick!!

    Thanks again, i feel much more positive about my 'new normal' now

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    Just politely demand your records. You are the boss and they are your property.

    I would get some second opinions before I would go ahead with a BAHA, bone anchored hearing aid. It sounds like your hearing is mostly a conductive loss then.
    Phil Berggren, dx 2003

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    Quote Originally Posted by jsmith View Post
    Hi very positive at the ENT today, first time ive seen him since i got the results and he was very apologetic about the previous treatment ive received. I have had my hearing tested but was unable to get a copy of the audiology report, they dont like giving you medical records!!

    My hearing loss is classed on the higher moderate loss scale, between 75 and 60 decibels i responded too, which is a slight improvement on before! my cochlear bits all were normal so its just a problem with the sound getting into the ear, (im not sure of all the technical terms!)

    Im having some lovely nhs hearing aids for the time being, but my ent man has sugested some bone anchored aids as my ears are still pretty raw inside from the infections and operations that i have had and bone anchored ones i could still use with a flare up, he said the op was relatively minor (if you ignore screwing titanium screws into my skull!!) i know nothing about bone anchored aids, but i am meeting with him after xmas to discuss these again with him, and to monitor all my other ENT bits and treatment ive been having.

    Still taking my 50mg of pred, and waiting for the rhumetologist to get back to me! 5mg reduction sounds much better to me, i know last time i was on them for my palsy the I was weaned 20mg a day every three days and it hit me like a brick!!

    Thanks again, i feel much more positive about my 'new normal' now

    My osseo integrated hearing implant works pretty good for me. Old name was bone anchored hearing aid. I have regular in the ear mold for a behind the ear hearing aid on other ear. I had to be in remission though for a year before they would consider any surgery for me unless it was emergency surgery.

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    I agree with Phil that bone anchored aids sound a bit extreme at this stage of the game. My digital aids have clear, open ear pieces which don't go far into the ear and allow plenty of air to get in. I think I could wear them even with an ear infection. I have mainly conductive loss and no one has ever suggested anything else.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    I agree with Phil that bone anchored aids sound a bit extreme at this stage of the game. My digital aids have clear, open ear pieces which don't go far into the ear and allow plenty of air to get in. I think I could wear them even with an ear infection. I have mainly conductive loss and no one has ever suggested anything else.
    Hi I agree it sounds a bit extreme, i need to look into it a little more, he said they dont usually offer it but he will make an acception, i have been really messed around, and if id of been listened to earlier, who knows i may be able to hear a little more.

    From what i understand, they take only minutes to do and can be removed just as easily in the future should they not work, the bone anchored ones will fit in with my lifestyle a lot better, but we'll see ive got til after christmas to think about it and see how i get on with my sexy over the ear ones!!

    I need to consider the risks with my medication too and healing, but will leave it a while, my heads still spinning from everything else.

    Still no word from rhemetology, everyone is on annual leave!! thats just great when you need advice, i'm hoping if i could get seen by a bigger clinic like birmingham then this wouldn't happen in the future. I have seen a GP that said 'have you tried to increase your steriods to make you feel better' i said no, that i wanted to talk to a medical professional first, and he then replied, well how do i know the steriods are making me feel worse!!! God bless the NHS. eventually we decided that i should take 55mg tomorrow and see if that improves!!

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    Well, I really know nothing about the bone anchored aids, I just thought they were for more severe stuff than simple conductive loss. True, the over the ear aids are not glamourous looking! I'm sure you will make the right decision.

    Does sound like they are a little loose with the advice on steroids and you need better docs for that. Pred can make people feel better or worse with either lowering or raising the dose! It is not that predictable. And its main purpose is to help control inflammation and the disease, not to immediately make you feel better.... it's not aspirin.
    Anne, dx'ed April 2011

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    Default take a look at this website

    Hi - I am also a 'J Smith' from England and after reading your post, felt prompted to finally register as a user.

    I was suspected of having WG in July 2011, but it seems I may have been 'lucky' to have suffered a secondary rather than primary vasculitis attack.

    Having gone through some of the emotions attachning to such a diagnosis, I deeply sympathise with anybody who has this horrid illness.

    I wish to draw your attention to the following website: Home Page | The Lauren Currie Twilight Foundation

    Whilst Lauren's case is heartbreaking - you will find some useful information here including a 'video' by Dr David Jayne at Addenbrookes.

    I wish you (and everyone on this forum) all the best.

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    jimix, welcome to the forum, and thanks for sharing the link. I think I've read about Lauren before.

    I'm wondering about "secondary" vs. "primary" vasculitis. Does this mean you had blood vessel inflammation that was a side effect of some other illness or condition?
    Anne, dx'ed April 2011

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    Hi there Jimix, there are a few of us J Smiths!! Thanks for sharing the link, i will spend some time looking at it.


    With regards to my steriods, im just concerned that my symptoms have returned, is this ok? i was expecting not to have the symptons return once reducing the dose and starting MTX, maybe im just panicing, i know that i will feel different with the change of the medication as my body gets used to it, but i really wasn't expecting to go back to how i was before, im not that bad, but each day is getting gradually worse, and today my nose is bleeding again! just worry i'll wake up tommorow and my ears will be discharging again too!

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    Hi Anne

    Well I am hoping that was the case although the other illness or condition remains unconfirmed.

    In April (2011) I had fleeting arthralgia, followed by a month of gastrointestinal problems, night sweats and weight loss followed by coughing up blood for a few days. You can see why the chest physician suspected WG!

    A CT scan a month later appeared normal and I have witheld from taking any medication throughout. I have had regular follow ups at the Hospital and my CXRs and PFTs are normal although my PR3 ANCA remains elevated (last count 36). As time progresses I am more hopeful I don't have an underlying condition (yet feel for those who do).

    Regards, James.

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