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Old 11-18-2003, 12:23 PM   #1
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sgraham HB User
Sarcoidosis

I did a search on this board about Sarcoidosis but didn't come up with much. I am wondering if anyone else is familiar with this Auto-immune disease? I have recently been put on Prednisone but with all the side effects and the mere fact it totally breaks down the immune system, I'm wondering if I should be trying to find another doctor instead of or in conjunction w/my Pulmonary specialist....like possibly an Immunologist?
Any thoughts? My Sarcoid affects my left lung right now....I have shortness of breath, sharp pains in the chest and back sometimes, headaches, cough and fatigue. Any information would be appreciated!

Last edited by sgraham; 11-18-2003 at 12:24 PM.

 
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Old 11-24-2003, 05:54 PM   #2
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californiasunflower HB User
Re: Sarcoidosis

Hi there!

I've done research on it and from what I understand, a Pulmonary physician is the specialty that you need to be seen by.

 
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Old 12-02-2003, 01:32 PM   #3
Mara
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Re: Sarcoidosis

Sarcoidosis can affect different areas of the body ask your doctor with your diagnosis and symptoms if you should have a consultation with other specialists to follow your case, such as a NeuroOpthalmologist or Opthalmologist for a thorough work-up to ensure your eyes are healthy.

Continue being treated and monitored by a Pulmonologist as this condition may be progressive as there are stages to sarcoid of the lung. Raise the issue of headaches with your doctor. It could be eye related or a manifistation of sarcoid from the lack of oxygen in the bloodstream which may prompt supplamental treatments to assist you with the shortness of breath you are feeling. Your pulmonologist should be able to help you more and discuss additional therapy treatments and options with you. Ask him if proactive therapy would be beneficial such as a special diet and or supplaments. Discuss with him your options. Take Care, G

Last edited by Gemi; 12-02-2003 at 01:44 PM.

 
Old 12-09-2003, 11:57 AM   #4
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renata77 HB User
Re: Sarcoidosis

Quote:
Originally Posted by sgraham
I have recently been put on Prednisone but with all the side effects and the mere fact it totally breaks down the immune system, I'm wondering if I should be trying to find another doctor instead of or in conjunction w/my Pulmonary specialist....like possibly an Immunologist?
Any thoughts? My Sarcoid affects my left lung right now....I have shortness of breath, sharp pains in the chest and back sometimes, headaches, cough and fatigue. Any information would be appreciated!
[url]http://www.isc-net.upenn.edu/~jmclauri/[/url]
The above is a great sarcoidosis resource site and has great information that will be helpful to you, about many aspects of sarcoidosis. As others have said, your pulmonologist is the right person to be the "head" of your treatment plan, and can refer you to other specialists as needed. You definitely need a referral to an ophthalmologist for routine exams to monitor the possibility of rare, yet silent and vision threatening retinal complications. I hope this helps! I have sarcoidosis, so you may ask me any questions you'd like, and I'll try to be of help.
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Last edited by renata77; 12-09-2003 at 12:18 PM.

 
Old 01-25-2004, 11:17 AM   #5
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bobnfran HB User
Re: Sarcoidosis

Hello,
I was diagnosed with Sarcoid in 1996 after complaining of a cough for almost 10 years. A chest x-ray showed it in 1992 but the report at that time did not mention it!! In 1996, the pulmonary doc said when it got bad enough to treat, that Prednisone would be the drug of choice. Since I haven't felt really bad or much worse since even though the x-rays don't agree, I have not taken steroids. Have you located sarcinfo.com???? VERY informative. I just had the tests suggested and they are a mixed result. But, the GOOD part is that there is a new drug that seems to put it into remission if not cure it (yet). What really blew me away was the directive to NOT take any Vitamin D if test results were high. I live in Arizona and am not ready to where Alpine heavy duty clothing in 116 degree temps when summer comes back. I'd strongly suggest you go to that site!!! I'm getting ready to prepare my doctor now to research this if he is so inclined. If not, I'll have to find an expert in one of the nearby cities - Phoenix, Tucson. BTW, mine is on the left side too. Really lousy for sleeping.

Quote:
Originally Posted by sgraham
I did a search on this board about Sarcoidosis but didn't come up with much. I am wondering if anyone else is familiar with this Auto-immune disease? I have recently been put on Prednisone but with all the side effects and the mere fact it totally breaks down the immune system, I'm wondering if I should be trying to find another doctor instead of or in conjunction w/my Pulmonary specialist....like possibly an Immunologist?
Any thoughts? My Sarcoid affects my left lung right now....I have shortness of breath, sharp pains in the chest and back sometimes, headaches, cough and fatigue. Any information would be appreciated!

 
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Old 01-29-2004, 01:04 PM   #6
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californiasunflower HB User
Re: Sarcoidosis

Hi all!

How long did all of you present symptoms before sarcoid was diagnosed?

What were the first symptoms?

I have eye problems.

 
Old 01-30-2004, 03:08 AM   #7
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renata77 HB User
Re: Sarcoidosis

I think my first symptoms were in 1990 - I was suddenly feeling exhausted just getting dressed to go out. I would go upstairs, change clothes, and then feel SOO tired that I would hate to leave. Then I began having more troubles a couple of years later when going for walks or to the mall became major problems for me. The housework seemed endless and exhausting. I would get weak and dizzy and feel faint a lot. I developed surface vasculitis after being at the ocean a few weeks. I had bouts of neurological weirdness and palpitations - you name it. I had swollen glands everywhere that never went away. Then I had a lesion which I thought was a wart that never went away, that began sometime around 1994 or earlier. In 1998, after the doctor tried without success to cauterize it, I was dx with sarcoid. I am only just now beginning to feel a lot better, and more like my old self. Eighteen months self-resolving, my eye!
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