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Still waiting for diagnosis. Oh the stress!!!

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jessica_51940
jessica_51940

Hi! I posted before. Had a nasty cough in February that would not

Go away- tickle in my throat,dry cough, no fever, hard to catch my breath,felt like I was straining to get mucus out of my lungs but there was none- nonproductive cough. It was terrible.

 Abnormal CT scan showed multiple pulmonary nodules indicating infection/inflammation. 2nd CT scan in April showed no change favoring infection/inflammation. All bloodwork labs are normal, no allergies, have reoccurring post nasal drip- CT scan of sinuses are normal. 

3 radiologists reviewed my CT scan and all stated it favors infection/inflammation largest nodule is 1.5inches. Ground glass opacity, lymph nodes are subcentimeter and not enlarged.  Lesions are in my upper lobes (3 measured in right lung and 2 measured in left lung) there is a small scar on my lung-mentioned in CT scan

Lung specialist mentioned sarcoidosis. Had a lung function test- pulmonologist said my results were good.  Had bloodwork done to rule out tuberculosis (very unlikely) and ACE to see if it would be elevated (results are pending) 

Pulmonologist said she believes it’s sarcoidosis. Have to do a follow up CT scan in July.

Lost weight (10 lbs) but was on a “eat clean” diet to help boost my immediate system (was on antibiotics for 20 days for sinus infection after the flu) 

I am petrified it’s cancer although I’ve mentioned my fear and anxiety of this several times and was told it’s “not likely” and I am “low risk” of all the things they think it is cancer is at the bottom of the list-sarcoidosis is more at the top. 

Symptoms now- I have a dry cough, mostly like a quick clearing or urge to clear my chest and it doesn’t produce phlegm. Sometimes it’s a tickle in my throat that causes the cough most of the time i cough once or twice at random- this is ongoing thoughout the day.  Some times the cough gives me the feeling that I’m trying/straining to clear out my bronchial tubes/center airway.

Had a sputum test done Friday- results pending 

I sleep OK most of my lack of sleep is from anxietyand fear of the unknown.

 I can walk at length, go up steps, Chase my 3 year old and  am not winded. Humid air makes me feel a little asthmatic-don’t have a history asthma but am told the nodules could cause mild asthma like symptoms. 

Any feedback and advice is appreciated 

0 likes, 6 replies

6 Replies

  • cris_b
    cris_b jessica_51940

    Posted

    Hi Jessica,  sorry your so stressed. You just need to relax until tests come back, I know it’s hard. Sarcoid is tough to diagnose. I myself only have lung problems when I have a flare up. Can be scary, stay strong until you know what’s going on.     Cris 
  • tyagi
    tyagi jessica_51940

    Posted

    Hi Jessica. Sounds like your medical team are following the usual route, and diagnosis of Sarc isn't easy. Try not to get overwhelmed by anxiety. I had similar fears years ago but once diagnosis was confirmed I was able to get treatment quickly. I live with Sarc. which flares up sometimes but mostly inhalers control it. Good luck.

  • david03145
    david03145 jessica_51940

    Posted

    Hi Jessica, it may not help with your fears, but l would caution you to gain a big helping of patience, as nothing happens quickly in my experience. Your symptoms are similar to mine at the start of my journey about 7 year's ago.

    You should ask about a biopsy to confirm Sarcoidosis, it's a simple yet effective proceedure. Take care of the side effects of Predisolone if you are put on steroids. I have a steroid inhaler called FOSTAIR which is effective against the cough so you can ask your medical folk about this.

    I hope this helps

    Good luck and kind regards

    David.

  • faz04177
    faz04177 jessica_51940

    Posted

    Hi

    My cough was the same with similar noduals in lung tested for cancer it was negative. 

    Then I read on another forum a lady who had similar issues, she too hyroxichlorquinn 250mg for 1 month and so I did the same and it cleared my cough and rarely do I cough now I had the same cough as you  and for over a year. It was intermittent and constant tried every cough remedy going without joy. I would ask your GP to get you on it.

    Sounds like sarcadosis as it mimics TB symptoms but is not it. I am certain by grace of god it will not be cancer. 

    Wish you the best of health. Oh and do keep taking long walks as exercise is imperative noting strenuous just mind clearing and relaxing 30 mins walks either early morning or evening. 

    Regards

    Faz

  • jessica_51940
    jessica_51940

    Posted

    Thank you everyone for the support 

    I do have a few questions you may answer.

    Do any of you get a burning sensation in your chest? I have this occasionally- often in the center especially with the dry cough when I want to cough up phlegm but there is nothing there.  I’m on a reflux med to rule reflux out. 

    Tiredness... sometimes I’m so tired the thought of picking up a pen is exhausting. It may not be all day but it’s certainly in spurts throughout the day 

    Anyone have that? 

     I found a sarcoidosis specialist in my area and made an appointment with them for next month. 

    These past 3 months have been a challenge as I have always been a relatively healthy person. 

    Thanks!! 

    • cris_b
      cris_b jessica_51940

      Posted

      Jessica , I didn’t have burning it just felt like a 20lb weight on my chest.  The exhaustion is the worst. You just need to react to what your body is telling you and don’t push it. Also I don’t know why but stress can make your symptoms worse. Just try to take it one day at a time.  Cris 
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