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Newly diagnosed with Sarcoidosis

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Old 06-12-2013, 03:13 PM   #1
kassie 1
Join Date: Jun 2013
Location: PA
Posts: 1
kassie 1 HB User
Newly diagnosed with Sarcoidosis


Diagnosed last week after months of testing. Initially lost vision in one eye and was told I might go blind. Next month was told I might have cancer in several places, and finally after three biopsies was confirmed with this diagnosis.

I have panicked, problem solved and planned my future and then adjusted those plans several times. I am in the process of seeing all specialists and continued testing.

Was initially relieved to have a diagnosis, relieved to have to have the least of all problems. Now it is beginning to settle in that I have a chronic illness to address.

I am here because today I realized that I need to talk about it and gain support. Thought I was handling it all well despite ups and downs, but today I recognized that this is overwhelming which each doctor is validating.

My worries are my vision and the fatigue. I took on a second job because my primary one has not given a raise in 3 years and has been laying ppl off. THis was before I learned there was a problem. I have never been sick in my life, there is no family history of medical problems so I feel so unprepared to deal.

I live alone which is becoming a concern and I am my sole support. Symptoms are consider so far to be moderate and I am in great health for my age so I am not sure what to think. Was informed that the first year is hardest.

So suggestions on what helped you to adjust and support as I post concerns is appreciated.

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Old 06-24-2013, 11:07 AM   #2
Join Date: Feb 2013
Location: Mandeville, LA
Posts: 7
Rosi995 HB User
Re: Newly diagnosed with Sarcoidosis

Hi Kassi. I hope others with more expereince dealing with your condition will reply soon! I just wanted to say hi and wish you peace. I understand how overwhelming this all is. I am still waiting for a diagnosis and have several doctors treating my symptoms. I imagine I will be relieved to finally have a diagnosis and not expereince the fear and frustration of not knowing. However, I recognize that having a diagnosis of a chronic illness really makes it all seem so real and permanent. I just want to encourage to stay hopeful. I have found these boards to be an amazing source of support and information.

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Old 07-24-2013, 02:24 AM   #3
Join Date: Jul 2013
Location: suffield ct
Posts: 6
rham12 HB User
Re: Newly diagnosed with Sarcoidosis

I was diagnosed almost three 3yrs ago and have been on and off prednesone. i had to have my spleen removed because it wasn't doing the job it is suppose to. my platelets were down. when they removed it, it was full of sarcoid. i now, am starting to have problems with my eyes. the key is to keep your calcium down. i am now taking plaquinal and prednesone to lower it. hopefully it does the job. When you get all the levels down you will feel better. from every dr i have seen they say it goes away. i have a Dr that has sarcoid also and he has no more symtoms. Good luck

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