Diagnosed with sarcoidosis in lymph nodes

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February of 2016 I had been having

Chest pain so one morning I stopped by the er to make sure it wasn't my heart. After a Ct scan and some lab work they decided to admit me into the hospital. The Ct scan did so abnormalities in my chest area so they did a pet scan and they told me they thought I had lymphoma but would need to do a biopsy to have a true diagnosis. I saw a pulmonologist and he would take 16 biopsy out of my lymph nodes in the thoracic area. The result didn't show anything so they sent me home with no diagnosis. This past december I had another pet scan and the lymph nodes were about the same however this time a radiologist did diagnosis it as sarcoidosis.

Here's my questions. First they have not gave me any prednisone for this. I may 3 to 4 weeks and be fine and then go a month and have chest pain, a heaviness in my chest, sob, fatigue and here lately weakness in my arms and legs. One other thing that I've noticed is each time I do feel bad it seems to be getting worse and lasting longer.

Any suggestions and thoughts would be greatly appreciated. I can't find much about this anywhere.

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  • Posted

    Hi Chris!.  I am not a doctor just a nurse and I am learning about this as I have been Diagnosed in Feb. 2017....My understanding is that sarcoid produces very distingushed "granulomas" in the tissue when biopssied (whatever organ)  I would not take your radiologists word for it and I would persue further answers.  A PET Scan is only one step to the diagnosis.  I fell into the trap of just following blindly (LOL) after my biopsy showed them in my lymph nodes.  they 'assumed' that I had neurosarcoidosis....because the lung biopsy showed the sarcoid.  My only symptoms then and now was I went partially blind.  the MRI showed sarcoid "type" plaques and they had gotten a positive from my lung biopsy so the assumption began....we think back in 2015 when I suddenly had unexplained pleuritic pain and supposed "pneumonia" that I actually had the pulmonary sarcoid 2 years ago that eventually resolved and left no scarring.  It left the granulomas in my lymph nodes there fore we KNOW that part is true...when I went partially blind in October 2016 that led to the eventual biopsy and MRI they tested me for everything and other than finding out I was very healthy...we did not find the cause until someone suggested the biopsy.....but they stopped looking after that.  I failed to improve after a hefty course of prednisone, failed Acthar Gel (injectable similar to prednisone but way less side effects), they put me on Humira and Methotrexate (what I am on now)....when I started to have stage III kidney failure etc (and I was not getting better...not worse either)...from the meds I pursued a new PCP and he is not convinced this is what caused the blindness so he is now saying..."Hmmmm maybe it ISN"T neurosarcoidosi that caused the vision loss" so they are again at least looking.  Clearly they are not going to biopsy my brainbut I am glad that I have a dr. that is willing to reexamine the entire "complicated" case.  maybe find the real cause of the sudden vision loss.  I DO (did) have the pulmonary sarcoid because the biopsy proves that.....they SUSPECT I have neurosarcoid, and skin sarcoid.  Dont let them pidgeon hole you and stop looking.   You can go onto Cleveland Clinic Sarcoidosis for more information.  my new dr.  is not with the cleveland clinic....but they are good for sarcoid, I currently use them for that.....I hope this helps a tiny bit. 

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    • Posted

      Magghe thanks for all the info. It definitely helps to hear and learn about other people experience with this. I guess for me my doctors have been let's wait and see because there isn't a cure for it anyway. I guess for me I need to know because my flare ups not sure if this correct but what I call it is happening more often, I feel worse each time and they are lasting longer. I've thought about going to the Mayo Clinic but if the Cleveland clinic is better for sarcoidosis I'll go there. Another thing that I've learned from reading about your experiences and others on here is actually how bad it can be. Doctors that I've talked to make it sound like it's nothing and will go away on its own. The way I feel now compared to a year ago I think I'm getting worse and need some kind of help with it. Thanks for all you info and help.

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  • Posted

    I think Mayo clinic would be good.  PM me if you decide on Cleveland Clinic though.  They say most cases resolve on their own BUT you may need occasional treatment for flares....and someone to monitor you!! smile Yes it is definately better than other diseases...but it should still be treated or monitored.  This is a good site to read...there are others but they are all negative people and scary things..people are a lot nicer, encouraging, and its less scary on here.

    I would want a biopsy so that they knew for sure....since the first one was negative for Sarcoid...I would want to know for sure....they would see the granulomas.

    I have also read some people have really had it bad...some mid ground....and some like me...not too bad....my pulmonary sarcoid resolved pretty much on its own and I have no scarring...Im lucky the only issue I really have is one blind eye IF thats even why I went blind.  Some people have sarcoid so bad I feel terrible for them but it makes me feel even luckier that I really dont have it too bad .

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  • Posted

    Hi Chris,

    I was first diagnosed in Oct 2015 with a persistant cough. I live in Australia so we don't have the availability of Cleveland clinics plus a lot of specialists here are very miss informed when it comes to Sarcoidosis. I agree with everything that Maggie has said, You need to take charge and insist on getting the roght test and definate confirmation.

    For me I have a real roller coaster with Heart, Lungs, Lymph Nodes, and Pherial Neuropathy all linked to the Sarcoidosis. But the biosys is important, whilst I had been in what we thought was remission it has now flared again after 6 months. Like Maggie high doses of Prednisone, Mycophenolate and Lyrica. Plus i now also have a defibrilator and pacemaker in my heart.

    Whilst I work full time it is hard some days and fatigue is something I have never experienced before this. You need to chase the right Doctors who will not only support you but give you striaght answers.

    All the best

    David

     

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    • Posted

      Thanks for the information David. I'm still confused about this as well. They diagnosed by the way it looked on a PET scan not from an actual test. I'm actually laying in the er now the fatigue, weakness in my joints and pain just got to bad today so I came to the er. They ran several test and have seen on the Ct scan the areas in the lymph nodes but don't know how to treat them. They are going to keep me over night for observation and possibly start steroids.

      Thanks again David for the info.

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