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  1. #16
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    Gees Bob, I hope as they do more tests they find that things are OK for you.
    Just do it!

    Kind regards Rod

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  3. #17
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    Quote Originally Posted by bueller View Post
    Can't offer any further info but wanted to send my best, really hope they figure things out for you soon mate. Keep us posted.


    my best wishes for you, Bob
    regards from Alberta, Canada

    ian

  4. #18
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    I reckon Bob that with your positive attitude that we here have noticed in the past,this will see you through this nasty infliction by nature upon your person.
    Any how know that collectively we here on the forum are thinking of you in this ordeal you face.
    Best Wishes.
    Johnno

    Everyone has a photographic memory, some just don't have film.

  5. #19
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    Thanks everyone for your kind thoughts.

  6. #20
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    Sorry to hear of your situation Bob however I'm sure your positive attitude and character will help you come through it.
    All the best mate,
    Cheers, Ian
    "The common law of business balance prohibits paying a little and getting a lot.. it can't be done.
    If you deal with the lowest bidder it is well to add something for the risk you run.
    And if you do that, you will have enough to pay for something better"

  7. #21
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    Perth
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    Thanks for all the good wishes folks meanwhile here is an update to my situation.

    Today I had a series of lung function tests and saw the lung specialist.
    Despite having a low level flu, all my lung function tests were normal
    Further blood tests are also normal with no indicators for lymphoma, and one minor indicator for Sarcoidosis.Sarcoidosis is very difficult to identify positively and is arrived at by eliminating other possibilities

    The specialist said given the number and size of the nodules, if they were lymphoma I would have more eternal symptoms (breathing problems, nausea, tiredness etc) which is probably the biggest indicator it is Sarcoidosis.
    The PET scans confirms previous CAT scans, increasingly suggesting what I have is Sarcoidosis and identified many biopsy candidate nodules near my lungs.
    Nevertheless specialist is ordering a Bronchoscopy, and at the same time will be biopsy-ing nodules to rule out Lymphoma.
    A nodule adjacent to the lung will be targeted using micro surgical and miniature UltraSound scanning gear that will detect and sample a nodule through the lung wall.
    It's surgical procedure done in 1/2 an hour in a Day surgery so out by 4pm which is good.


    If it is Sarcoidosis they will wait and see how it progresses before undertaking treatment as I could be already recovering from it.
    Other than recovering from the Flu I still feel OK.

  8. #22
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    Good to hear that it isn't something worse. Hope you get well soon.
    Innovations are those useful things that, by dint of chance, manage to survive the stupidity and destructive tendencies inherent in human nature.

  9. #23
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    Oct 2013
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    Perth, Australia
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    Quote Originally Posted by BobL View Post
    Thanks for all the good wishes folks meanwhile here is an update to my situation.

    Today I had a series of lung function tests and saw the lung specialist.
    Despite having a low level flu, all my lung function tests were normal
    Further blood tests are also normal with no indicators for lymphoma, and one minor indicator for Sarcoidosis.Sarcoidosis is very difficult to identify positively and is arrived at by eliminating other possibilities

    The specialist said given the number and size of the nodules, if they were lymphoma I would have more eternal symptoms (breathing problems, nausea, tiredness etc) which is probably the biggest indicator it is Sarcoidosis.
    The PET scans confirms previous CAT scans, increasingly suggesting what I have is Sarcoidosis and identified many biopsy candidate nodules near my lungs.
    Nevertheless specialist is ordering a Bronchoscopy, and at the same time will be biopsy-ing nodules to rule out Lymphoma.
    A nodule adjacent to the lung will be targeted using micro surgical and miniature UltraSound scanning gear that will detect and sample a nodule through the lung wall.
    It's surgical procedure done in 1/2 an hour in a Day surgery so out by 4pm which is good.


    If it is Sarcoidosis they will wait and see how it progresses before undertaking treatment as I could be already recovering from it.
    Other than recovering from the Flu I still feel OK.
    Very glad to hear it's nothing crazy mate!

  10. #24
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    Though some of you might like to know about this

    I went into hospital this morning at 7:30 am for a bronchoscopy.
    2 hours of pre-admission forms and waiting around, into the theatre at 9:30, came round at about 11:30am, and arrived back at home at 2:15 pm.
    Just a bit of a sore throat and feeling OK seeing I did end up having a general anaesthetic.

    Preliminary results are positive.
    They tried to sample the insides of 4 of the lumps located just outside a lung but even the small lumps were too hard for the sampling needle to penetrate, which means these lumps are calcified which is consistent with sarcoidosis.
    Better still the surge said this is also indicative of the Sarcoidosis having stopped or at least receding.
    They di sample other tissue from around the lumps to see if there is anything else going on
    The surgeon said the calcified lumps probably won’t disappear - well not within my lifetime.
    I have another PET scan booked in 2 months time which will show if any of the other lumps are still growing.
    The calcification of the lumps suggest I have had it for at least a couple of years and it could even be decades.
    Appointment with specialist will follow in a few weeks time.


    Now here is an interesting little side story

    About 3 years ago I did have a few months of slight breathlessness and coughing especially at night.
    The GP thought I might have mild asthma and he gave me a Symbicort (budesonide) turbo inhaler just to try out to see if it worked, and I used it for ~3-4 weeks and the cough went away
    This stuff is a cortisone based powder and guess what is often used to treat Sarcoidosis?




  11. #25
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    Good to hear Bob. Careful with the steroids, they tend to upregulate TLR expression. This effect may make you more likely to have exaggerated immune responses later if you stop taking the steroids. This is part of the so-called steroid addiction that asthmatics frequently develop.
    Innovations are those useful things that, by dint of chance, manage to survive the stupidity and destructive tendencies inherent in human nature.

  12. #26
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    Quote Originally Posted by rob streeper View Post
    Good to hear Bob. Careful with the steroids, they tend to upregulate TLR expression. This effect may make you more likely to have exaggerated immune responses later if you stop taking the steroids. This is part of the so-called steroid addiction that asthmatics frequently develop.
    Cheers Rob. I stopped using the Symbicourt as soon as my cough went 3 years ago.
    Felling pretty good this morning, still have a hint of a sore throat that hurst less than the roughed up bottom lip.
    Apparently the bronchoscope rubbed my bottom lip onto my teeth and as the work the camera back and forth that rough things up in that area..
    You think they would have that sorted out with a bit of vaseline?
    Not complaining though as the news looks good.

  13. #27
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    Feb 2015
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    Oz
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    A while back when I was diagnosed with a very aggressive form of RA the Rheumatologist sent me off for a raft of tests to rule out sarcoidosis and TB along with lung function tests and so on. Annoying part is they can never give a definitive answer, everything is simply a best guestimate. On the positive side the cough cleared up and the Doc said my lung function was phenomenal, best of all they decided against punching a needle through my chest wall to try and get a sample of one one of the nodules. The RA continued to invade and pretty soon I was crippled eventually being admitted to hospital for pneumonia a couple of weeks ago. Whilst there they stopped all my RA meds and lo and behold the RA affected joints improved a little, I can actually tie my shoelaces and dress myself now. Still can't lift anything or undo jars, hopefully a new biologic will work, cimzia certainly didn't. I won't be going back on MTX or hydroxy, that's for sure, they absolutely crippled me! Modern medicine???

  14. #28
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    Annoying part is they can never give a definitive answer, everything is simply a best guestimate
    That has been my experience as well.
    Of course what doesn't help is how we are all different, whereby every individual responds, even just a little, different to any given disease or condition .
    This is a good thing otherwise we'd all die from a first contact with a superbug.

    My understanding and it has been confirmed by all 4 doctors I have spoken to about this and what is presented on professional medical level web sites, is that Sarcoidosis is just a general condition descriptor given to inflamed lymph nodes that is not caused by more clearly definable diseases like lymphoma. It's basic a general descriptor after everything else has been ruled out.

    As I said in a previous post the causes of inflamed lymph nodes leading to fibrosis and calcification are not well understood.
    The overall reporting rate for Sarcoidosis is around 1 per 10,000 persons although it could be more than this because more persons than this probably experience minor doses and as it does not affect them in any way whereas a few percent of sufferers that cope a large dose and are caught late into the disease can die from it.
    There is considerable evidence that it runs in families so there appears to be a generic predisposition for it.
    It presents in females at about double the rate of males, but that could be because females are more likely to go to the doctor when something ails them
    The normal age range is between 20 - 40 years of age.
    It also affects persons of African descent more than non africans.
    There are so many indicators of the causes that it is difficult to know where to start
    One theory is that it is cause by some of the around 250 bugs known to be similar to TB.
    Green wood workers seem to get it more than dry wood workers.
    Inorganic exposures like, combustion products, and metal (especially aluminum, barium, beryllium, cobalt, copper, gold, rare earths, titanium, and zirconium).and silica dusts can cause a very similar reaction in some people i.e. dependent on genetic predisposition. Beryllium (a metal) dust and vapour exposure in particular can produce Beryliiosis with identical symptoms to Sarcoidosis. One study suggests that 5% of sarcoidosis is actually Berylliosis.
    Apart from perhaps Berylliosis it is not possible to determine the cause of of Sarcoidosis for a given individual.
    An individual may work their whole lives exposed to meta dust but could contract sarcoidosis from an organic source

    Anyway, the docs have all said I will just end up chasing my tail trying to find a cause.
    The reason I would like to know is less about my specific cause and more about not triggering the situation in the future.
    I consider I have reasonable wood dust extraction in my shed but a possible cause may be because because I have been working with more metal in the last 3-4 years.
    I do have a fume hood which I do use for welding and some angle grinding and it is very effective for removing welding fumes.
    However I also undertake some metal cutting/grinding and belt sanding outside the influence of the fume hood hence am looking at adding in some further metal dust extraction.
    It's not just the metal itself but for example, the fibres and binders used in grinding wheels and belts that could be a problem for me.

  15. #29
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    Quote Originally Posted by sacc51 View Post
    Annoying part is they can never give a definitive answer, everything is simply a best guestimate. ....... Modern medicine???
    We tend to forget that medicine is not an exact science and that humans are involved in the process.
    Tom

    "It's good enough" is low aim

  16. #30
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    Very interesting reading Bob. I have found this very informative, every word you and others have been posting. One thing that could be the next time bomb for a lot of people is the use of CBN grinding wheels. When I was in the US a few years ago, they were only becoming available and a guy showed me how well his worked. After I left and hit the road again, I turned into the sun and could not believe all the microscopic metal particles that had settled on my glasses. I wonder how this will effect peoples lungs.
    Rgds,
    Crocy.

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