Sarcoidosis

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I'm creating this page for those with a medical interest in my sarcoidosis.
This is how it all went down.

TEST	RESULT	REFERENCE RANGE
CHEM:
SODIUM	137	133-145 meq/L
POTASSIUM	4.4	3.5-5.5 meq/L
CHLORIDE	105	97-108 meq/L
C02	27	21-33 meq/L
ANION GAP	5	5-17 meq/L
TOTAL PROTEIN	6.6	6.0-8.2 gm/dL
ALBUMIN	4.0	3.4-4.8 gm/dL
GLOBULIN	2.6	1.9-3.8 gm/dL
SGOT (AST)	21	5-45 U/L
SGPT (ALT)	18	5-55 U/L
ALK PHOS	84	25-123 U/L
BILIRUBIN, TOTAL	0.8	0.0-1.2 mg/dL
CALCIUM	9.3	8.5-10.5 mg/dL
BUN	11	5-23 mg/dL
CREATININE	1.0	0.6-1.5 mg/dL
GLUCOSE	91	70-110 mg/dL
TRIGLYCERIDES	135	25-220 mg/dL
CHOLESTEROL	227 H	140-202 mg/dL
HDL CHOLESTEROL	39	35-90 mg/dL
CHOLEST INDEX	5.8 H	0.0-4.4
LDL CHOLESTEROL	161 H	30-143 mg/dL
T-3 UPTAKE	26.8	25.0-35.0 %
T4	9.3	4.2-11.7 ug/dL
T4 ADJUSTED	8.3	4.2-11.7
TSH (HIGH SENS)	6.09	0.30-6.50 uIU/ml

Dr's Notes, Lab notes, and all clinical findings related to my sarcoidosis	Organ
6/15/01 Primary care office note: "xx" comes in today to review results of her recents labs. She continues to smoke and is having some dyspnea on exertion. The eczema on her posterior neck has cleared. Physical examination: Lungs: Clear without wheezing. Skin: She has some facial redness/rash consistent with acne rosacea. Area of eczema on neck appears to be healing. Impression: 1. Smoker 2. Reactive airways Plan: The patient was given three samples of Zyban and the toll free numer for further information on the patch. I will see her back for follow-up in three weeks. She will finish her antibiotic in the meantime. A chest x-ray was obtained today which was normal. This was reviewed with the patient and she was reassured. xx, MD	CHEST
6/18/01 Phone message to Dr. [in my chart] For: Dr. xx Dr. xx [radiologist] Re:; patient xx. ABNORMAL CXR! MEDIASTINUM LOOKS ABNORMAL MAY BE MEDIASTINAL LYMPHADENOPATHY. RECOMMENDS CT-SCAN.	LYMPH NODES
6/15/01 Radiology notes on X-RAY: CLINICAL INFORMATION: Dyspnea, smoker. FINDINGS: The pulmonary interstitium is prominent. The lung volumes are large. These findings likely reflect smoking. Heart size is normal. Fullness of left aortopulmonary window is present, raising question of lymphadenopathy. In addition, the right paratrecheal stripe is thickened above the level of the azygous vein. IMPRESSION: Possible mediastinal lymphadenopathy. This could be furhter evaluated with CT scan of the chest with intravenous contrast. xx, MD	LYMPH NODES
6/22/01 Radiology notes on NEW x-Rays taken for CT scan comparison Examination: Chest (2 views) Clinical Information: An outside chest radiograph is reportedly abnormal Findings: Two views of the chest were performed as per my instructions for planning the scheduled chest CT and for correlation with that study. The cardiac volume is normal. The mediastinum and hila are abnormal with mediastinal and hilar lymphadenopathy present. The lungs appear clear. Impression: Mediastinal and bilateral hilar lymphadenopathy. xxMD [hello! huge red flag screaming sarcoidosis, so why didn't they tell me at that point. I was scared to death of cancer].	LYMPH NODES
6/22/01 CT scan: Clinical information: Abnormal chest radiograph with mediastinal and hilar lymphadenopathy Findings: The examination is performed with intravenous contrast and comparison is made with the concurrent chest radiograph. There are numerous enlarged mediastinal lymph nodes. Image # 16 shows a 2.8 cm x 2.0 cm pretracheal lymph node. Image #19 shows a 7.0 cm x 2.0 cm confluent left para-aortic lymph node. There is subcarinal lymphadenopathy. Bilateral hilar lymphadenopathy is present larger on the right. Image #23 shows a 3.0 cm x 2.2 cm right hilar lymph node. The lung parencyma appears normal. There is no pulmonary nodule. There is no pleural effusion. The study includes images of the upper abdomen. The liver is normal. The bile ducts and pancreas appear normal. There are several mildly enlarged retroperitoneal lymph nodes. There are enlarged lymph nodes in the hilum of the spleen. The spleen is normal in size but has numerous small low-attenuation regions best seen on the narrow windows. See spleen. Impression: Mediastinal and bilateral hilar lymphadenopathy consistent with either lymphoma or sarcoidosis. The presence of retroperitoneal lymphadenopathy and abnormal spleen suggest that lymphoma is more likely. xx,MD	LYMPH NODES SPLEEN
6/26/01 Oncologist visit [Notes edited for length, redundancy and privacy]. ...The patient is scheduled to leave tonight on an airplane which takes her on a vacation. She will not be back for about 10 days. We have offered her a tissue biopsy but she would like to wait. She already has an appointment with Dr. xx for surgical consideration....... Examination: ...I performed a lymph node palpation of her neck, supraclavicular, inguinal and exillary areas and found absolutely no evidence of palpable lymphadenopathy.....everything else he lists is just normal. Assessment and plan: 1. Diffuse adenopathy in the chest. I did show her the scans and she noted the lymphadenopathy as I did. I think we can do nothing until tissue is obtained. Unfortunately, I was unable to find any peripheral adenopathy that could be biopsied more easily than a mediastinosocopy. Since she is seeing Dr. xx soon, I believe that he will suggest a mediastinoscopy, which I would agree with. Obviously if this is lymphoma, she will need a full workup including CT scan of the chest, abdomen and neck, plus a bone marrow aspirate and biopsy bilaterally. If this is sarcoidosis then she will be treated with other drugs, probably Prednisone. 1. Allergies to Penicillin and Keflex 3. Skin infections. It is remotely possible that this is all secondary to infection, however tissue diagnosis is still required. She might merit an infectious disease consult with xx as to why she keeps getting these infections. xx, MD	LYMPH NODES
7/19/01 Mediastinoscopy notes from Surgeon: ANESTHESIA: General ANESTHESIOLOGIST: xx, MD PREOPERATIVE DIAGNOSIS: Mediastinal Adenopathy POSTOPERATIVE DIAGNOSIS: Mediastinal Adenopathy PROCEDURE: Cervical Mediastinoscopy FINDINGS: Enlarged lymph nodes in the pretracheal and the right paratracheal region consistent with probably lymphoma INDICATIONS: The patient is a 37-year-old female who underwent a routine physical examination. During the examination, she had a chest x-ray performed and was found to have probably mediastinal adenopathy. A CT scan was obtained which confirmed the presence of mediastinal adenopathy. Concerns were for lymphoma and , therefore, plans were made for mediastinoscopy for tissue diagnosis. She did not have any other enlarged lymph node stations that were more easily accessible. DETAILS OF PROCEDURE: The patient received Levaquin as she is allergic to Keflex. She is brought to the operating room and placed in supine position. Appropriate monitoring lines and pneumatic compression devices were placed. She underwent a general anesthetic. She was placed with her neck hyperextended. Her neck was prepped and draped in sterile fashion. A transverse incision was made just abo e the sternal notch. The incision was carried through to the platysma and between the strap muscles, onto the trachea. A plane was established in the pretracheal space down into the mediastinum. A mediastinoscope was inserted and dissection with the mediastinoscope revealed enlarged petracheal and right paratracheal lymph nodes consistent with what was seen on the CT scan. These lymph nodes were dissected and samples were taken for both pathology as well as for cultures. Hemostasis was achieved. The incision was then closed using 3-0 Vicryl to reapproximate the strap muscles and the platysma in separate layers. Then, skin was closed with 4-0 Vicryl subcuticular stitches. Dressing were applied. There were no apparent complications. xx, MD	LYMPH NODES
7/20/01 Pathology report: Tissue Source: Right lower paratracheal lymph nodes FINAL DIAGNOSIS: Right lower paratracheal lymph nodes: Lymph node parenchyma identified which shows extensive non-caseating granulomatosis with calcification. Consistent with sarcoidosis.	LYMPH NODES
7/25/01 Follow-up surgery visit at primary care. He does a big sweep of "negative" under the Reivew of Symptoms table, including skin, where the choices are rash lump itchy and dry. At this visit I told him I was concerned about a firm lump underneath my skin on my arm. He said "oh its just fat". He didn't note it. All he noted was my chronic skin lesion issue: "Pt is in today for followup of mediastinoscopy which showed a sarcoid. This may explain the skin lesions she has been suffering with. She has been using Triacinolone cream which seems to be helpful. She is still smoking but has cut down. Review of systems: Negative for ENT, cardiopulmonary. She has no pruritic chest pain, no other problems." [what?!]	SKIN
10/11/01 Pulmonologist [Notes edited for length, redundancy and privacy]. CHEST X-RAY demonstrates marked right peri-tracheal and peri-hilar fullness, consistent with hilar adenopathy. IMPRESSION: Stage 1 pulmonary sarcoidosis. The only question I have with respect to specific organ system involvement relates to the patient's skin. I have asked that she be evaluated by a dermatologist in this regard. The is no current indication for corticosteroids treatment..... Dr. Note to my primary care: Dear Dr. xx Thank you very much for sending Ms. xx to my clinic for evaluation of pulmonary sarcoidosis. Given the current clinical manifestations, she would be defined as having Stage 1 disease, which confers on her an 80% chance of spontaneous remission. I performed office spirometry and ECG today, which failed to demonstrate any significant abnormality. She will need an eye evaluation and her CBC, serum calcium, and liver function tests should be obtained at a baseline. <snip>	LYMPH NODES LUNGS
5/6/02 [10 months after my 1st complaint...] Bumps in right arm - x 1 year. "xx" was seen today for evaluation of a bump on her right arm. She has a history of sarcoidosis. This raises the question of whether the bumps are related to her sarcoidosis. She requested a biopsy today. PROCEDURE: After informed consent was obtained, the skin was anesthetized with 1% Xylocaine. A 5 mm punch biopsy was obtained and the specimen sent to pathology. The wound was closed with twho interrupted 5.0 nolon sutures. PLAN: Return in ten days for suture removal xx, MD	SKIN
5/7/02 Pathology report: SPECIMEN: Right arm biopsy CLINICAL DIAGNOSIS/DATA/HISTORY: Possible sarcoid DIAGNOSIS: Skin identified, consistent with arm region, which shows numerous non-caseating granulomas in dermis. Consistent with sarcoidosis. No cellular atypia. xx, MD	SKIN
5/16/02 Primary care note: 38 year old female presents with a rash on the right arm that was biopsied and turned out to be a sarcoid. She only has cutaneous and pulmonary but no ocular. She has been followed by a pulmonologist and opthalmologist but nothing is active so no specific treatment is required. She will educate herself about sarcoid and will get back to me if she has any active symptoms. xx, MD [Again, what? Nothing is active? and what rash??? I had a hard nodule underneath my skin, not a rash! My nodules were actively multiplying and getting bigger and darker and harder. I have not seen this Dr. since this visit]. * Note I quit smoking 3 days after this exam. Have not smoked since.	SKIN
8/28/2002 Follow-up Chest X-Ray. Findings: The adenopathy has incrased in size mildly to moderately since March. The lungs appear normal with no significant interstitial nodular disease identified. No pleural effusion. View x-ray Right before this x-ray I was laid off, and ran out of insurance shortly after. No more sarc checks for a while.	LYMPH NODES LUNGS
No sarcoid checks for 3 1/2 years Sept 2002 - Sept 2004: No insurance Sept 2004 -  May 2005: Blue Cross, but no sarc checks June 2005 - June 2006: United Healthcare Although insured through temp agency, it was not comprehensive, so sarc checks postponed 'til conversion to fulltime employment. But fate got in the way....
3/20/2006 Eyes! Ophthalmologist notes: Pt states very painful light sensitive os, started last night. Some tearing os. Diagnosis: Iridocyclitis - primary Assessment: Iritis os -- pt has sarcoid Plans: Use meds rx'd, rto 2-3 days....sooner if worsens [meds were optical steroid drops (predforte) for the inflamation, and dilation drops (cyclopentolate) to relax the iris and to halt dilation. Reason: the iris inflamation made the dilation changes horrendous] [These labs are a little hard to extract but I'll do my best here:] Anterior Segment Exam / OS Conjunctiva > Bulbar > 3+ redness 360 degrees Epithelium > wnl, small round opacity Depth/Cells/Flare > /trace /trace Optic Disc > size/ ratio > 0.2 / 0.2 Retina > vitreous > clear Exam method > 20 diopter, drops > MYD 1% * Note I asked the Dr. directly if my iritis was due to sarcoidosis and she said yes. ----- from uveitis.org ---- "Iridocyclitis is a term used to denote inflammation in two parts ofthe uveal tract of the eye; the iris and the ciliary body. It derives its name from combining iritis (inflammation of the iris) and cyclitis (inflammation of the ciliary body)."	EYES
January 2007: With stronger insurance that came with permanent employment, got on with an internal medicine Dr. who took over management of my sarc., so time for f/u chest x-ray Radiology notes: Findings: 2 views of the chest again demonstrate enlargement of the mediastinum consistent with lymphadenopathy. This involves the AP window and the right paratracheal region prominently. There is that slightly plump appearance of the hila is less prominent than before but similar. There is no infiltrate nor parenchymal lung abnormality identified. No pleural effusion. Bony thorax is unremarkable. Heart size is normal. Impression: Mediastinal adenopathy and probably hilar adenopathy, typical findings of sarcoidosis, and without definite change compared to previous exam [5 years ago]. No new abnormality. Or as the Pulmonologist simplly put it: Lymphadenopathy still present. No decrease or increase.	LYMPH NODES LUNGS HEART
2007 Note from myself: Issues with inflamation still continue. I suspect sarcoid playing a part in the unrelenting inflamation of my nasal membranes and turbinates. On a scale from 1-10 the effectiveness of Flonase is about 5. A (rare for me) cold virus got out of hand with pulmonary inflamation, producing short-term athsma and bronchitis. Sarc may have contributed to the inflammation. Remember, people don't usually die from sarcoidosis -- it however can make existing conditions (such as pneumonia) worse. I have just a small concern regarding lungs. A little more wheezy than used to be and shortness of breath occurs sooner. Sometimes I get really weird dry coughing attacks that make me gasp. Honestly, I assume its because I'm nasally congested 24/7/365. This stuff here is not a problem, just something I've noticed.	SINUSES LUNGS
2008 Right now, I'm unemployed and uninsured again. Working on curbing stress, and being positive. A Learning Experience: I had a sudden idea to make the most out of a situation that I hate and have no control over. I got the notion in my head that the dermatology students at the nearby teaching university might enjoy seeing some cutaneous sarcoids so I contacted the school. Turns out they were just getting ready to have an annual event where about 100 students come in and look at some selected cases of unusual diseases and they invited me to be one of the cases. I went in and had my own room (very nice room with a view of the ship canal and I-5 bridge). I didn't do the gown since they would be able to see my arms from my tank top I wore. Groups of about 8 students plus an attending or resident came in for about 10 minute sessions, separated by the ringing of a bell. This went on for 4 hours. They did feed us and give us gas money. The students came in and I invited them to touch my arms and really get a feel for the depth and shape of my nodules. One student in each group would get to do a differential diagnosis. Most were very good. I didn't like the students who just stayed in the corner and stared, and the ones didn't touch or touched so light it was like a feather. I told them it wouldn't hurt me, but some were too wimpy. The ones that got in there and felt the depth got a nice surprise and they smiled with fascination and thanked me. Last but not least I also had the opportunity, when I remembered, to give the quick 411 on sarc and to suggest to the students that if they find sarc in a patient who doesn't have a previous diagnosis, to recommend they get a chest x-ray and evaluation from their doctor because they might have things going on that they didn't know about, and that sarc might explain lots of stuff going on that has been a mystery until the biopsy confirmed sarc. These are the terms used to describe my cutaneous sarcoidosis during examinations: Plaques (or plaque-like lesions) Violacious Non-scaly Indurated Some were annular, with central clearing (soft in clear area) Almost no blanching Apple jelly (yea, I thought that was weird too) Infiltrated in the dermis The plaque on my nose is called lupus pernio, just because its on my face My lip has a sarcoid lesion Other things I didn't know. Diascopy, using a thin glass slide pressed down on a lesion, reveals currant, or apple jelly appearance Sarcoidosis plaques can be mistaken for tuberculosis plaques. Erethematous means red, and violacious means purple. The brownish red and purplish color is indicative of sarcoidosis. All but one of the Drs. called my sarcoids plaques, but also called them nodules. One Dr. said that they were nodules not plaques because of their depth. Picky picky. Erethema nodosum, a sarcoidosis related condition, is inflammation of the fatty tissue and usually happens on the legs. I don't have it but was told that if I get it to have it looked at right away. The dermis is thick, and if you have sub-cutaneous it is in the fatty layer underneath the dermis. That's why its uncommon. Mine appears to be mostly infiltrated into the dermis. Injected (not topical) corticosteroids may reduce or eliminate lesions. One attending said that some gulf war veterans seem to be getting sarcoidosis. So there you have it. My skin sarcs. I helped science and turned something that is negative into something positive. I also learned quite a bit about cutaneous sarcoidosis and my particular involvement. A very educational day. Incidentally, one of the administrative assistants who was there helping with the event told me that she happens to have pulmonary sarcoidosis that is in remission. It was so cool to finally meet another sarkie in person!	SKIN

Please — break the mold.     Help cure an unpopular but deadly disease. My disease: Sarcoidosis.