Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: mecher
  • March 25, 2011
  • 00:57 PM

I was diagnosed in 2000 after several years of being sick, with pulmonary Sarcoidosis. I was hospitalised for many months on full 24/7 O2 & IV Prednisilone. When released from hospital, i was put on oral Prednisilone & MS Conten (slow release Morphine).
In 2006 I stared to feel better & had been off the Pred for a while, with just short courses occassionally. I had weaned myself off the MS Conten & became pregnant with my son who is now 4 but was one of many pregnancies that had prior to this never resulted in a live birth.
I was well throughout the pregnancy but after 20 hours of full labour I & my son both went into respiratory distress & my son was born via C Section very quickly on Feb 2nd 2007.
I recovered very quickly from the delivery & did not use any pain meds at all. My wound though took a long time to heal.
In 2008 I became pregnant again. This time within a few months of his conception, I started to experience symptoms I had suffered with Sarcoidosis. I lost my voice which had been back to normal while I was well, I had alot of Shortness of Breath & I felt excessively tired. I was overweight but during the pregnancy, I lost 13kgs & after my 3.3kg son was born, i was 22kgs lighter than at the beginning of the pregnancy. Six days before he was born, i spent 24 hours in hospital with a severe "asthma" attack, even though i'm not
My second son was born Feb 11th 2009 & I have been very ill since.
I have all the symptoms I had with Sarcoidosis but I cannot get help because I can't find any Dr's who 1. Believe Sarc comes out of remission 2. Will help me get answers.
I have just finished seeing a Lung specialist who is not concerned that I have 52% lung function, I have several small (visible on CT Scan but not xray) granulomas but as they have only increased mm's in 12 months & not cm's, he's not bothered by this, he also is not bothered by the amount of scarring on my lungs which is profuse.
With my begging, I have received a feferal to an Opthamologist to have my vision checked for Uevitis & other Sarcoidosis symptoms.
My face, neck & throat are often swollen as are my parotid, salivary & thyroid glands. I have numbness in my left foot, I have shortness of breath, I have excrutiating pain in my upper back & wherever i have swelling or swollen glands. I have pain from touch throughout my body & cannot play very much with my two boys. I am constantly having to tell them, don't do that because mummy hurts.
I saw my GP today about my glands & he has finally said i can & has referred me for a scan of my parotid gland but won't send me to an ENT because he doesn't feel it necessary. I often feel as though i am choking or suffocating because it feels that i have too much "something" in my neck/throat.
I have absolutely chronic sinus & throat infections almost continuously. I also get bronchitis, pneumonia & pleurisy with common regularity.
I need help, the pain is getting too much. I am depressed and on anti depressants & i am totally frustrated at getting no hope & being made to feel like a hypochondriac.
I am in Western Australia & we don't have any Sarcoid specialists here.
Anybody have any suggestions to help me, please?
Kind regards to all of you
Mecher :confused:

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