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New Sarcoidosis Diagnosis

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char1970
char1970

Hi I'm a 46 year old female recently diagnosed with Sarcoidosis which was confirmed by a chest lymph node and lung biopsy. I have several symptoms that are quite severe such as blurry vision, shortness of breath, difficulty talking due to raspy stressed voice and breathlessness, fatigue, sore joints and rash and itchyness on my right rib cage. These symptoms have been going on since June 2016. However some symptoms have been longer.

I am waiting to see my new Respirologist however I am worried and would like some input on the severity of my symptoms. Am I very sick?? As some days I feel as if I can't get outta bed. Please help?

0 likes, 36 replies

36 Replies

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  • chris0814
    chris0814 char1970

    Posted

    I hope you get relief on some medication. I have it in my eys chest and esophagus. Currently on steroids and Remicad infusions every 3 weeks.

    Eye drops aND breathing treatments.

    I see my rhemotologist as my main doctor. I have had this for 17 months. Was on methotrexate shots once a week for 8 months it made my breathing and lungs worst. Just make sure you get a physician that has experience in sarcoidosis and just does not put you on predizon and say you will be better in 8 weeks.

    Chris

    • debie1966
      debie1966 chris0814

      Posted

      Hi Chris, may I ask what symptoms you had that led to the esphogus diagnosis?

      Thanks, Deb

    • chris0814
      chris0814 debie1966

      Posted

      Hi Deb,

      It closed up and was extremely hard to swallow. The GI surgeon did biopsies when they preformed the uper GI 3 weeks ago. They say it is very rare.

      I have it in the chest cavity, eyes, skin and esophagus. Also now a type 2 diabetic 3 shots one pill.

      The meds the put me on yesterday for this

      Are Surcraalfate and Pantoprazole. He hopes with the steroids and Remicad it will open more. If not surgery

      This has been a horrible disease. My pulmonary and Rheumatologist have consulted with the Mayo Clinic in Phoenix.

    • debie1966
      debie1966 chris0814

      Posted

      Hi Chris, that sounds awful. I've never heard of anyone having it in their esophagus, I figured it was very rare. I wondered what your symptoms were and how they found it. Sorry you had to go through that, ick.

      Sounds like you have a good team of doctors, that's hard to find when it comes to this disease. I'm impressed they consulted Mayo Clinic.

      I totally agree, this disease is awful. I wish there were more research on finding a cure.

      Thanks for getting back to me and sharing your experience. I appreciate it.

      Best of luck,

      Deb

    • char1970
      char1970 chris0814

      Posted

      Hi Chris,

      I'm so sorry that is terrible. I hope things get better for you soon.

      I also have it in my esophagus I have a very raspy strained voice and sound like a man most of the time. I'm hoping with treatment I will also gain my voice back. They say there is no promises as my right vocal cords are being pinched offsad

      I appreciate you sharing your story with me.

      Take care of yourself xx

    • shannon33919
      shannon33919 chris0814

      Posted

      I too have Esophagus issues. Trouble swallowing, choking on solid food, Severe spasums in Esophagus. They said it is called Jackhammer Esophagus and they found it with a motility test.  
  • Mrs.L386
    Mrs.L386 char1970

    Posted

    Hi char, my husband has all the symptoms that you describe. He has trouble getting his breath after two steps. He does breathing treatments twice a day and is always tired. What I didn't know is that people go in remission with this disease. I wish you the best.

    • char1970
      char1970 Mrs.L386

      Posted

      Thank you for sharing. I hope your husband feels better soon and fingers crossed that all people suffering with this disease go into remission

      Hugs

  • tangles
    tangles char1970

    Posted

    Hi Char.

    I have some good news for you and some potentially bad news for you.

    All your symptoms are typical sarcoid. Fatigue is common and frustrating.

    Good news...I got the illness 30 years ago yet I have lived a full and active life and am now in my mid sixties. Suffering only some long term effects of the illness.

    Bad news...I am worried about your blurred vision as uveitis is a common illness connected to inflammatory conditions such as sarcoid. Sarcoid suffers often have this problem. Go to an eye specialist immediately this is very important.

    Following is some notes on this condition. The worst case scenarios should be ignored as I am sure they don’t apply to you.

    Regards

    ?Tangles

    What is Uveitis?

    Uveitis is a general term describing a group of inflammatory diseases that produces swelling and destroys eye tissues. These diseases can slightly reduce vision or lead to severe vision loss.

    The term “uveitis” is used because the diseases often affect a part of the eye called the uvea. Nevertheless, uveitis is not limited to the uvea. These diseases also affect the lens, retina, optic nerve, and vitreous, producing reduced vision or blindness.

    Uveitis may be caused by problems or diseases occurring in the eye or it can be part of an inflammatory disease affecting other parts of the body.

    It can happen at all ages and primarily affects people between 20 ñ 60 years old.

    Uveitis can last for a short (acute) or a long (chronic) time. The severest forms of uveitis reoccur many times.

    Eye care professionals may describe the disease more specifically as:

    Anterior uveitis

    Intermediate uveitis

    Posterior uveitis

    Panuveitis uveitis

    Eye care professionals may also describe the disease as infectious or noninfectious uveitis.

    • char1970
      char1970 tangles

      Posted

      Hi Tangles,

      Thank you your information has been very helpful and appreciated. I see an eye specialist quite frequently as I lost vision in my left eye many years ago due to a retinal detachment. I am going to ask him about uveitis as the biggest concern is that I don't loose sight in my good eye!

      I will keep you updated once I see my specialist.

      Cheers,

  • chris88181
    chris88181 char1970

    Posted

    Hello,

    ?I am a 53 year old who was diagnosed 5 years ago with pulmonary sarcoid.  I have been on and off Prednisone for the past 5 years.  I have cardiac PAC's and SVT, skin involvement as well as joint issues. It seemed every time I got weaned off the Prednisone my sarcoid would flare up and we'd start all over again.  I also have osteopenia from the Prednisone, coughed so hard that I broke 2 ribs.  I was started on Methotrexate in December, I actually feel pretty good.  I am one of those in that small percentile that will probably be on medication for the rest of my life.  My question to any of you on Methotrexate is do you drink alcohol?  One of the things my husband and I enjoy is wine.  They say not to drink when on this med, but life is too short already and I'm having a hard time with this.  My heart goes out to all of you suffering with this crazy disease, it is truely frustrating!

    Chris

  • char1970
    char1970

    Posted

    Hi Ladies,

    Well today I met with my Respirologist and to say the least I am somewhat relieved, confused and still scared.

    The good news is my lung function is good however the bad news is apparently I am a bit of an anomaly as they are still a little confused as to why I can barely speak and I'm out of breath. At this point I will be having more tests on my heart, eyes and sleep patterns.

    They feel right now that the reason for my symptoms may be because my vena Cana vein and treachea are being severy compressed my my enlarged lymph nodes due to the sarcoid. And also feel my fatigue is due to the lack of blood flow through the vena cava.

    They do not want to start me on meds until everything is ruled out as they feel side affects could cause me more grief.

    I will be seeing him again in 3 months.

    My frustration is I want to feel good now not in months to come but at the same time I understand his concerns. Has anyone else gone through this?

    • tangles
      tangles char1970

      Posted

      Hi Char

      I am confussed to hear your report.

      "lung function is good"

      What was your lung volume compared to normal?

      What was your gas exchange compared to normal?

      Are your chest Xrays showing any shadowing?

      Regards

      Tangles

    • tangles
      tangles char1970

      Posted

      Hi again

      Your words in your early report state

      "confirmed by a chest lymph node and lung biopsy"

      Your lungs have been effected from your own post.

      How can they now be clear???

    • char1970
      char1970 tangles

      Posted

      Hi Tangles

      I'm confused as well. The doctor never gave me numbers regarding my lung function just commented that my lung function was good. The funny thing is I can't walk the length of myself.

      My journey started with a chest xray and yes there was shadowing that is how I ended up getting a CT then biopsy.

      At this point I'm not sure what to do except do the other tests ordered. Electro cardiogram, ECG, 72HR Holter, Eye exam, Sleep study. More blood work.

      Any advice would be appreciated.

      Cheers

    • char1970
      char1970 tangles

      Posted

      Hi,

      The doctor said lung function is good also said there are nodule clusters. I'm new to this and not sure what all this meanssad

      Thanks,

    • tangles
      tangles char1970

      Posted

      Hi Char

      Proceed with all recommended tests as they are all on target.

      In relation to your lung function tests I would be asking for a copy of the report along with copies of any other reports available. 

      This is your right as it is your body in question.

      Regards

      Tangles

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