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Can anyone give me advice

Posted , 3 users are following.

Jimjam2412
Jimjam2412

I got byopsy done on my neck and chest lymph nodes and was told I had sarcoidosis the reason for the byopsy was I was a keen hill walker and I got to the stage I could not walk very far anymore because of joint pain .I have suffered for 3 years will sore stiff joints swollen neck and get lung tests every 3 months where it fluctuates how me breathing can be good or not so good..

The last 3 months have been the worst my joints have been ..I seen my consultant last week who I only see every 6 months to be told the sarcoidosis has left me as axray I got done on a trip too A&E showed my lymph nodes were about back to normal .As it's the worst I have felt in 3 years I can't understand . Consultant was quiet dismissive and say talk to my GP as a 56 year old man who went from hillwalking and having a golf membership to can't walk 100 yards without chronic pain I don't know what to do

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3 Replies

  • debie1966
    debie1966 Jimjam2412

    Posted

    Hi,

    I'm sorry you're having to deal with this, sarcoidosis can be life changing. It can go into remission (inactive) and sounds like it may be inactive in your lymph nodes however, sarcoidosis can attack your joints, bones, skin and any organ. I've been told it won't show in your bones and joints in a regular x-ray but requires a CT, MRI and sometimes a PER scan. They found it in my bone marrow, affecting my bones from head to toe, via a PET scan where X-rays did not show anything.

    I'm not sure which type of specialist you were seeing but for example, a pulmonologist wouldn't normally look for sarcoidosis in other places then your lungs and lymph nodes. I have a rheumotologist, cardiologist, sarcoidosis specialist, pulmonologist, etc.. and each speciality monitors their area.

    I recommend following up with your GP first to see if they want to do further testing themselves or would recommend referring you to a rheumotologist. dont forget it won't show in X-rays if in your joints or bones. If your GP won't help you, or isn't helping you enough, reach out to a rheumotologist yourself.

    There are several very good sarc specialist. Check out the registry on the sarcoidosis foundation website. http://stopsarcoidosis.org

    Another thing to keep in mind, sometimes coming off your medication (if you were on prednisone for example) and being in remission does not mean it won't become active again. So keep an eye on your lymph nodes and lungs.

    A lot of people are very blessed and only experience sarcoidosis for a short number of years but some do have longer battles, including life long. Hopefully that's not you though.

    Also, it may not be sarc causing your problems so be sure to stay after your doctors until you get answers. Be your own advocate.

    Hope this helps.

    Best of luck,

    Debie

    • Jimjam2412
      Jimjam2412 debie1966

      Posted

      Hi There thanks for your reply.

      I am seeing my GP this week and will ask her advice on the things you

      Said regards seeing a rheumatologist and ask if I can get a MRI or c/T scan never heard of a pet scan but will have a look..

      Thanks again .jim

  • camey03589
    camey03589 Jimjam2412

    Posted

    Just because they don't find it on X-ray doesn't mean it hasn't moved or caused life altering damage. You might try a different rhuemetologist.

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