ACCESS an etiological review of Sarcoidosis

[Mike Bartolatz]

http://www.musc.edu/sarcoidosis/accesssummaries.pdf

[Betty Lou]

Mike,
The article explains a lot about Sarcoidosis that I did not know. I know that my brothers worry about getting sarcoidosis so this article confirms that it does run in families. I am a high school science teacher which puts me at a higher risk of having sarcoidosis.
Thanks again for your forum.
Betty Lou

[Mike Bartolatz]

Betty lou,
do you have lung involvement confirmed by Close section Gallium Scan, ACE test or biopsy?
has your opthalmologist mentioned possible inflammation of the middle of the eye, pars planitis or vitritis, snowballs or snow banks? any mention of KP's in the anterior chamber? posterior involvement with any of the following terms: exudative material, white dots, vascular changes, Cystoid macular Edema or epiretinal membrane formation?

optic neuritis can occur with sarcoidosis as well as central nervous system changes. have you had an MRI of your Brain to look for lesions? do colors look different from eye to eye? any double vision?
the eye is an extension of the Brain and spinal cord in many ways.

you are most welcome for the information but this is YOUR forum too. the best part is it is free and you make what you want with it. expend effort and you will learn allot here just like under your guidance at your high school science classes.
then share the new found information with others in your community as it can prevent BLINDNESS when MODERN therapy is provided rather than a corticosteroid only approach to treatment. If you want, I'll find articles at http://www.uveitis.org regarding MTX efficacy in SARCOID uveitis treatment. they should be here in one of the forums but could have been lost when we were hacked a few weeks ago.

Wish you the very best,
Mike

[Betty Lou]

I was diagnosed with sarcoidosis of the skin when I had erythema nodosum, a 2 degree fever for a month,exreme fatigue, extreme dizziness(but didn't have fluid in ears), loss weight, severe joint pain and tested negative for other diseases in 1999.

The skin biopsies of the neck, leg, and hand performed by the dermatologist where I had erythema nodosum showed: within the subcutis, there is septal panniculitis present; widening of fibrous septa containing multinucleated giant cells, histiocytes, lymphocytes, and eosinophils ; fibin deposition and perivascular hyaline depositon; and small granulomas were identified.

During this time my eyelids swelled shut 5 different times.I had something called SICCA. During this time, I had a tick in my head for a day. A couple of months later, the lyme test showed up negative. I had severe eye pain, light sensitivity, and redness. The opthalmologist diagnosed me with Schirmer's test as having dry eyes. He also thought that my eyes resembled someone with a connective tissue or autoimmune disease.He noticed a butterfly rash on my face. My dentist diagnosed me with dry mouth.

I saw an allergist who tested me and said I was allergic to mold, grasss, trees, cats, wheat, dust mites, and other common stuff. I was placed on allergy shots but I quit taking them because they made me feel so bad.

I was sent to a pulmonologist but didnt' have hilar node enlargement so the doctor didn't do a biopsy. I had breathing tests but they were barely abnormal.He said that I had no sign of pulmonary sarcoidosis. The chest xray showed scattered granulomas in the lung and calcific hilar nodes.

The ACE level was 37 and the sed rate was 69. The 353RAT complement component C4 was 49 . I tested negative for Lyme disease, tularemia, histoplasmosis, strep, TB, rheumatic arthritis, lupus, and a panel of other autoimmune disease.

I also saw a gastrologist and had a endoscopy and colonoscopy and tested negative for colon cancer, diverticulitis, irritable bowel disease, and Crohn's disease.

I saw a rheumatologist and all the tests came back negative. He wanted to put me on methothrexate due to over 100 spots of erythema nodosum on my legs, arms, and neck. He decided to let the dermatologist prescribe me this since the dermatologsit had started treating me first.

When the dermatologist talked to my family doctor about methotrexate, my family doctor refused to let me be put on methotrexate. I was also found to be hypothyroid and was put on Synthroid. I was put on liquid potassium iodide for the erythema nodosum which didn't help much. BASED on all the tests, two dermatologists and one rheumatologist diagnosed my with cutaneous sarcoidosis. For the pain, I was put on Lortab.

Since 1999, I have seen a rheumatologist 3 times and the tests were negative for RA and lupus and other autoimmune diseases.

In 2000, I was having pain on the side of my head and above my ear. I saw a neurologist and the MRI of the brain came back normal.

In 2003, I developed pneumonia for the first time and also developed asthma.
Since 1999, I always have erythema nodosum bumps on my legs and my eyes have never been the same.

Last year 2007, I saw a rheumatologist who said that I didn't have rheumatoid arthritis or lupus. All my tests were negative for this.

For the past year, my left foot has been going numb. I was tested for diabetes but the test was negative. I saw a neurologist this summer and he said that I had peripheral neuropathy in my right lower legs. I take Neurontin for this which has helped alot.

A month ago, one of my metatarsal bones broke as I was walking done the hall at work. The xray showed a new break and also showed another metatarsal bone was broken and had been healing. I don't know when I broke this bone. My bone density test last year said that for my age, the bone of the femur was 98% of what it should be for my age.

Mike, after reading your posts, I now see the importance of being tested again. I hope that when I see my endrocrinologist, that he will know what to do. The rheumatologist is in the same office as him.

My newest symptom is cold hands. For the past two weeks, my hands stay cold so at night I sleep with a heating pad on my hands so that I can sleep. It is probably my thyroid acting up again.

When I saw the eye doctor 2 weeks ago for increased eye pain with the iritis and the posterior synechiae, he said that my optic nerve was okay. I am now tapering off of decadron for the iritis and posterior synechiae which I have had for about 6weeks.

I didn't answer all your questions, because I don't know the answers. The information that I provided is what I know.
I appreciate your help.
Betty Lou

[Mike Bartolatz]

did they do a lip biopsy to look for inflammation of the salivary glands related to the severe dry mouth? often related to Sjogren's syndrome and systemic lupus erythematosus. I know a lady in Canada who has a similar situation as yours. it took about 20 years before the Antibody markers appeared in her blood. the butterfly rash is signficant for lups.

sometimes autoimmune disease processes come in two's and threes or more.
the cold hands is a symptom of Raynaud's. it as well as your legs indicates vascular changes. this has to be stopped or it will only get worse and that includes your eyes. you should seriously consider seeing an ocular immunologist who can use various immunomodulatory therapy to prevent irreversible complications to your eyes.
I cannot recall if I recommended a specialist to you but I can if I didn't. you have a very serious and complex disease going on and I think you need another attending physician.

wish you the very best,
Mike

[pilljame]

You said within the subcutis, there is septal panniculitis present; widening of fibrous septa containing multinucleated giant cells, histiocytes, lymphocytes, and eosinophils ; fibin deposition and perivascular hyaline depositon; and small granulomas were identified. and yes, did they do a lip biopsy to look for inflammation of the salivary glands??


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[Betty Lou]

Good evening,
The doctor didn't do a lip biopsy of the salivary glands. I do have dry mouth which can be attributed to meds that I take and also have dry eyes. I have plugs in my eyes.

I do have a bone graft in my femur that came from a cadaver when my hip prosthesis popped through the femur a week after surgery in 2001. I still wonder if the bone that I have in my femur now came from a person that had some type of autoimmune disease that my doctor wouldn't expect a 55year old person to have due to my age, type of work, SW Virginia, home, or race.

Betty Lou

[Mike Bartolatz]

Sarcoidosis attacks the Lacrimal glands which produce the fluid for your tears.
uveitis related to sarcoidosis responds extremely well to Methotrexate therapy stopping the inflammation and preventing further complications of uveitis in the back of the eye in many cases.

I have no comment on the bone graft stuff. I'm not a doctor.

Wish you the very best,
Mike