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Sarcoidosis

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Unread 01-19-2013, 04:19 PM   #1
alaska49
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Default Sarcoidosis

Does anyone have any advice on Sarcoid. I have been diagnosed with it in my Lungs, liver and now stomach. The pain in my liver is getting worse I just got out of the hospital after such a bad flare. I have been having severe vomiting and have diareah for the past month. And now my chest wall is crushing. My doctors is sending me to temple university in philly to see if its getting worse in the liver and if they have any ideas, Also when I vomit about 15 min later I get confused cant talk and start drooling very bad. I am only 25 the doctos say the sarcoid was caused by me having full body Reflex Sympathetic Dystrophy from foot surgery and now this. I just wanted to see if anyone had any advice. On tuesday night when I was admitted that night it got so bad my heart was racing and BP was too, my EEG came back bad. the doctors were getting so scared m fevers were getting higher and was sweating and shaking they thought I was about to go into septic shock one doctor was so scared he paced in my room for 6 hours and the heart monitor would go off every 20min so everyone would come running in again. I was so scared cause in there eyes I could see how scared they really were too. I have had many scary hospital situations but this had to of been the worst the thing I kept thinking was I dint say good by to my mom. If anyone has any ideas please I could use them.
Thank you

Samantha
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Unread 01-19-2013, 04:41 PM   #2
mrsD
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That sounds awful.

I have a suggestion...ask your doctors if you could have
hereditary angioedema. This has some blood work that can be done.

Sometimes they don't look for everything. Do you take an ACE inhibitor or Angiotensin receptor blocker like Benicar? These can cause bradykinin attacks, with swelling, vomiting, diarrhea etc, pain, and painful joints. There can be swelling of the feet, or hands or anyplace including the lips. There are no hives typically with this, as it is not a histamine response.

Here is a link explaining:
https://docs.google.com/viewer?a=v&q...-YOiVLjSOaauNg

Another:
http://emedicine.medscape.com/article/135604-overview

You can have acquired angioedema, which comes from drugs mostly from ACE inhibitors or the hereditary type, which has "attacks" for most of your life. These can be mis-diagnosed, as other things.
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Unread 01-19-2013, 09:39 PM   #3
alaska49
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I have no swelling, I use too alot but that was my RSD but since thats been under control it hasnt bothered me. Can you have it and not have any swelling? I have alot of medical conditions so when something new shows up it becomes a waiting games with tests after tests. So far I have seen 207 doctors in 8 states looking for help it started with RSD, then thyroid cancer and now Sarcoidosis in th lungs, liver and newly in the stomach. I am just worried if its moving if it could be attcking my heart.

Thanks for the info and I will do more reading on it.

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Unread 01-20-2013, 08:15 AM   #4
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People can have more than one thing. This is the diagnostic problem.

I have twisted stomach and intestines, which I was born with and is called a "malrotation". I have had huge GI attacks my whole life and in my late 20's I ended up in the hospital for 10 days, with this diagnosis after alot of testing.

I am now just recovering from a huge attack of "something" which included my GI (started there), breathing, burning pain,
joint pain, and puffiness of hands and feet and elsewhere.
I have erythema on my arms neck and face, my lips swelled for 3 days, but hugely. I take Lisinopril for blood pressure, and it appears this whole long miserable attack was perhaps drug induced lupus (which will test with normal ANA pattern and be confusing).

But when I returned from the doctor this time, I started researching bradykinin, because this is what the peptide in the body is that causes all the grief. And that is when I found HAE.
Looking back on my life, I see this pattern of attacks since I was very little. If that is true, adding in the Lisinopril pushed me over the edge finally. I don't get the redness with most of the swelling. But my toes and tips of my fingers started to look very much like some of the RSD pictures on your forum. They also hurt and throbbed in the night.(mostly at that time). I've been off that drug now for a week, and finally I am starting to feel normal. My puffiness was all over, even in the pelvic area! Very painful there, I can tell you!

But all my life I had the vomiting spells, the GI pain, which seemed to pass in a few days. Now that I am older, I've learned to avoid certain triggers, and the vomiting is less. But the lower GI still swells up. I am waiting for the lupus tests, and will ask for the complement tests next, as I really think I had this HAE and it was just not serious enough for me to end up in the ER all the time. It can be very serious when breathing is affected, and the medical sites say 20-30% fatality if the larynx closes up.

It is the ATTACKS, the somewhat normal inbetween times, then the attacks again that seem to be the pattern for HAE.
Just reading your post from RSD seemed familiar to me.

Read the links, and please keep this in mind, for the future. You never know with the rarer syndromes.
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Unread 01-21-2013, 01:05 PM   #5
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Default Sarcoidosis

Cardiac sarcoidosis can be very serious and it is important to get plenty of follow ups to make sure that sarcoidosis has not invaded the heart. The best diagnostic tests are scans of the heart to see if there are granulomas present in the heart. You can read about cardiac sarcoidosis at the Cleveland Clinic website or the Stop Sarcoidosis foundation. The Cleveland Clinic has an excellent sarcoidosis center and it would be a good idea for you to visit them as you have RSD as well. With these multiple conditions, it is best to have a variety of specialists working on your case so that they can coordinate your care and find the best way to treat you. Seek advice from pulmonary specialists, rheumatologists and liver specialists so that you can manage your condition no matter where the sarcoidosis decides to take up shop. Don't worry about getting a lot of tests and visiting a lot of doctors; it is important to get the scans and follow-ups so that you can stay ahead of the disease. Good Luck.
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