sacoidosis disease

[simbacatz]

Has any one ever had sarcoidosis disease? What were the symptoms,how was it diagnosed?

[jessica931]

I have had VERY swollen eyes for one month now, and on sep. 18 my parotid glands both swellled out. So now  I have swollen eyes and parotid glands. I'vs seen an allergist, ENT and a RA. First it was sjogren's then it was miescher chelilitis, and now sarcoidosis. I still have to go through a series of tests. But i'm on 80mg predisone and it barley helps. my parotid glands are so swollen they are pushes my jaw out of line. Dose this sound like sarcoidosis? I have no rashes...yet! and no other aches or pains. I'm 29 and hate leaving my home!!! I don't even look like myself anymore!  

[lrdst]

I didn't- unless you mean like arthritis- I did have rheumatoid arthritis with the sarcoidosis.

[Springbrock]

wELL THEY DID A BIOPSY AND THE SERGEON SAID IT WAS NOT SARCOID AND PULMONOLIGIST SAID IT WAS. ANYWAY 5 WEEKS AGO I STATED HAVING TIGHTNESS IN MY LEFT CALF. lIKE THE START OF A CRAMP, THEN THIS TIGHTNESS WENT INTO MY FOOT AND NOW IT HAS TRAVELED UP MY LEG OVER MY KNEE. I DONT KNOW WHAT IT IS. SO NOW IT IS FROM MY FOOT UP TO 3 INCHES ABOVE MY KNEE.

[Springbrock]

i mean like atrophy and muscle cramps.

[simbacatz]

Thank You, Irdst.

[lrdst]

I'm not sure what you mean by muscle problems. I was weak all over and was tired all the time, and generally caught any virus that came my way. I almost thought for awhile that the doctors would think I was a hypochondriac because it was like I had something new every other day.

[lrdst]

I answered your other thread but I wanted to put it here too- the test they did was called an ACE test. I remember at the time when I was treated with Trentol it was kind of controversial because when I would move to a new city, the doctors had never heard of treating it with Trentol, don't know if that is still the case, though. That was 15 years ago.

[lrdst]

I had sarcoidosis. There are several different kinds. Mine was of the skin. It is an autoimmune disease so my symptoms were always changing, but the things that stayed constant were weight loss ( wish I could have THAT back)and iritis, or uvitis- floaters, and of course the swollen parotid gland, and swollen lymph nodes. After seeing so many doctors, I went to the University Of Cleveland Hospital and the doctor there said it was either Sjorgrens or Sarcoid. Sure enough, it was Sarcoid. Put me on a drug called Trentol. It is usually a blood thinner, I believe, but in my case it worked.

[Springbrock]

Did you have muscle trouble?

[PlateletGal]

You may want to check out the MP website. There is a thread where you can request info for a physician who is familiar with the Marshall Protocol in your area. The physician will then check your vitamin D levels, including your D 1,25 hydroxy level, which will tell whether or not you have Th1 inflammation. They will also be able to tell you whether or not they think the MP will help you.

Dr. Trevor Marshall had sarcoidosis and he created the MP and saved his own life with this protocol. Dr. Marshall worked with the other Dr. Marshall (no relation), who won the Nobel Prize for his discovery of H-Pylori in patients' who have ulcers. The MP is relatively new (2004), but there are already many success stories (you can find them there on the website). The treatment is still considered research, but the medications they use (antibiotics & Benicar) are NOT research medications.

[alchris]

my brother in law was diangnosed with this sometime last year he had a cough that never goes away and had a lung biopisy which confimred the disease.

[Springbrock]

has anyone ever has sarcoid effect there muscles in legs? or swallowing and talking? I had biopsy in lungs and surgeon said not sarcoid  but pulmonoligist said he thinks its sarcoid. My throat feels like I am being strangled, my tongue feels tired and the my left calf feels light/sore for 4 weeks.

[simbacatz]

Thank you,
The reason i was asking was because one of the pain people could experience is swallon parotid glands. I have swallon parotid glands for five years now and no doctors can figure out whats wrong with me. And someone had mentioned that they had swallon parotid glands and had sacoidosis.

[PlateletGal]

You may have sarcoidosis if you:

1. have a cough that won't go away.
2. you develop a sudden, unexplained skin rash.
3. you experience sudden, unexplained weight loss.
4. you experience chronic fatigue or a general feeling of ill health.

There are many patients' who have sarcoidosis on the same protocol I am on. You can find their profiles if you google, "Marshall Protocol" + "sarcoidosis"