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View Full Version : Went for the CT Scan and to the Pulmonary Doc Today



SandyR
07-13-2009, 08:40 PM
He looked at the old chest xrays. Said he the hilar adenopathy (enlarged lymph nodes in the lungs) was debatable. Actually said the enlargement was "not impressive". Why do doctors insist on saying something is not impressive to them? I am not trying to impress you. I am trying to get some answers! Anway, he gave me a breathing test (passed with flying colors) and sent me for a contrast CT Scan. CT Scan confirms the hilar adenopathy. So it seems I do have sarcoidosis, but am still waiting a formal label of that. I asked the radiologist to send the results to the rheumy and the PCP. Both received the results and the rheumy said he thinks the lung guy will now want a biopsy of my lung tissue (OUCH!) and to reschedule our visit till the lung guy is done with all his testing so we can work out a treatment plan once we are sure of what we are working with. Also to be sure the sarcoidosis is Stage 1. The PCP called shortly after and told me he wanted to run another lab on the blood work I have to do for him, which made me glad I didn't get to it this morning like I had planned. Been doing a lot of investigating on Sarcoidosis. Not much consistant info out there. :skeptical: A lot of it is conflicting. For example, some sights say hispanics are least likely to develop Sarcoidosis. Other sites say English, Irish and Puerto Ricans are the most likely (I am 2 of the 3). What to believe? Who knows. Seems that there is a link betwwen Saroidosis and Lupus, something called Lupus Perenious(?), but it also seems like there are a lot of overlapping symptoms. It's back to the lung guy Monday afternoon. My bosses are going to love that, but I can't help it if the doc works 9-5 so they are going to have to suck it up.
Sandy

mountaindreamer
07-13-2009, 08:52 PM
oh sandy,

i am so sorry that you are having to deal with yet another diagnostic process. I hope the drs. can get their opinions together, and they can get you started on a treatment plan....if there is one.

let us know what you find out on monday.....keep up the good work searching information...you are doing a great job.

Danica01
07-13-2009, 10:50 PM
Sandy.......what do you mean you are not there to impress?????? Remember, we are their entertainment :-) Anything out of the ordinary is important to you and the lung doctor needs to treat it like it is just as important to them. That is so frustrating and hard! I am so sorry you are having lung problems. Lung problems are so hard to deal with. I really hope it gets better soon. I am also very happy that your doctor is running some extra tests to see how far along everything is. It sounds like you have a few doctors on your side and taking this seriously......woo hoo!!!!!!! Your boss will have to suck it up and if they are at all concerned they will WANT you to go the doctor and get well. Good luck Monday and please let us know how it goes and until then I will keep you in my thoughts :hug:

mortifiedat52
07-14-2009, 06:24 AM
can i ask what were your first symptoms??

SandyR
07-14-2009, 03:26 PM
Phyllis - thanks for the encouragement. Sometimes it is hard to remember that I am the one keeping the wheels of progress in motion. I will definately update this thread when I go again.

Danica - I knew there was a reason I was sitting there in top hat and tails but for the life of me I couldn't figure it out at the time! :) How silly of me to have forgotten! :laugh: I feel the same way about the bosses. They don't really know the sarcoidosis part or even the full extent of all the medical problems. All they see is I LOOK like I am feeling better and yet I am still at all these doctor offices. I always give them the notice about my time off in writing as soon as I know and I have plenty of days left in the year and I didn't even go away this year and I don't have a history of calling out for things like going to the beach or being hungover so they know that if I am off, there is a real reason. I really think he likes to just give me a hard time since he knows that when I am there, I work hard. Today I gave him the heads up that they are going to probably want a lung biopsy so I don't have to hear any complaints. Really, he and I both know he has no right to bother me about my time out, but he is the type of person who just loves to complain whenever the opportunity presents itself.

mortifiedat52 (I love your name!) - the symptoms that started this bout of testing really go back 3 years, but I didn't realize that till I started researching Sarcoidosis. Right now, I am asymptomatic (unless you look at the chest xray or CT scan and see the hilar adenopathy). The symptoms from my last flare that made the rheumy (#2) want a chest xray were fatigue, swelling of the feet and ankles, joint pain, chest pain, shortness of breathe, rash on my shins, rash on eyes and fingers. The first rheumy had ordered xrays of the ankles and lower back but not the chest and the second one thought she should have done a chest xray and sent me for one to rule out Sarcoidosis (which he was 90% certain that I didn't have since I am asymptomatic). The earlier symptoms that I had over the last 3 years but didn't realize were even symptoms are: persistant dry cough, shortness of breathe, skin rash, inflamation of the eyes, red eyes, fatigue, nasal congestion.

SandyR
07-14-2009, 03:32 PM
mortifiedat52 - I should also mention that there are other symptoms not covered by this disease and with the Reynaud's and the fact that AI patients usually have multiple AI problems, I am not willing to or planning to ignore these issues either. They include: mylar rash, sensativity to bright lights (natural or flourescent), rash/fatigue after being in the sun, arthritic-like joint pain, mouth ulcers. I also think (and everyone I ever lived with has told me) that I have unusual hair loss, but how do you acurately judge what is and isn't too much and what is normal amounts? Once I get done with the lung guy and go back to the rheumy, I will address thos concerns with him as well.

Pearl
07-14-2009, 03:58 PM
Sandy -

Just wanted you to know I am thinking of you and praying for you. I know this must be a very difficult time. Please keep us posted on your progress.

There is a female comedian, first name Karen, last name - I can't remember...used to be on Saturday Night Live. I think she has sarcoidosis. As I recall, she came out very publicly when she was diagnosed. I think she even may have even written a book about her challenges with it. She may have compiled some useful info. I will do some research and post the info for you if I find it.

Try to stay positive. Your mind is very powerful.

Jana

Pearl
07-14-2009, 04:01 PM
Her name is Karen 'Duff' Duffy. You can see her picture and read about fundraising events, etc. at the link below:

http://www.stopsarcoidosis.org/news/KISS07release.htm

Take care,

Jana

SandyR
07-14-2009, 08:46 PM
Jana,
Thank you for the prayers. I fully believe in the power of prayer and your kind thoughts are welcomed and much appreciated.
I had never heard of Karen Duffy, but I will check out her site. Tomorrow. Otherwise, tonight I will never go to bed. :no: Thanks for sharing it with me.
Sandy

wrightrs
07-15-2009, 01:38 AM
Sorry you are having such a rough time. I have Pulmonary Hypertension. I have some of the same symptoms you are having. The summer has been rough for me. My shortness of breath wears me out when it's hot. Hope you feel better soon.

SandyR
07-15-2009, 02:50 PM
Becky,
Thank you for your kind words. What do you do to get that breathe back?

Danica01
07-15-2009, 06:48 PM
I am so sorry the two of you are struggling right now. I have severe asthma and I understand what it feels like to have problems with your breathing. I hope the two of you are able to have some relief soon. I am sending you lots of gentle hugs :hug:

SandyR
07-15-2009, 07:58 PM
Geez, Danica. The IBS, the Lupus Symptoms and now the lung problems. I feel your pains, girl! I really do. :(