Author: Dan Holmes (---.dc.dc.cox.net)
Date: 03-21-04 09:27
Hi Sarcinfo,
This is my first posting, so in addition to my requests/questions, I have also included a summary of my sarcoid progression. I have been (and continue to) review the information presented on this site and have the following questions and requests:
1)Can you please send me the details on starting MP?
2)From what I have read on your web site, I understand that an elevated 1,25 D reading is a very strong indicator of Sarcoid. Can anything else cause this test result to be elevated (beyond bad lab testing)?
3)In my case, since I have often eaten salmon and enjoy the outdoors, I expect to have a notable supply of vitamin D stored in my system. Is there anything (other than future avoidance) that I can do to speed the reduction of vitamin D from my system?
4)Can you provide the name of an MD in Northern Virginia (Vienna, Reston, Fairfax), Washington D.C, the NIH, or Maryland familiar with MP?
The remainder of this email are my experiences with Sarcoid and short-term plans. I would greatly appreciate any comments and suggestions. Please note that I found this web site 4 days ago, so many of my past decisions (and acceptance of medical advice from various professionals) will be different going forward.
I am a 43 year-old white male; physically active (hockey, cycling, hiking, canoeing) and overall in good health until 1 year ago. We have lived in Northern Virginia for the last 3 years since moving from Ottawa, Canada. After turning 30, I started to experience minor seasonal allergies but the symptoms (sneezing and burning in my eyes for 1-2 seconds), which cleared up in a few weeks with no medication.
In April 2003, I noticed that when I woke up, I was weasing for the first 5-10 minutes. Also, while cycling, if I climbed a small hill, I experienced a shortness of breath almost instantly (without any burning in my legs). I was jogging ~20 minutes per day at a fairly low pace and I had only minor breathing restrictions, which recovered in 2-3 minutes.
I saw my GP and learned that many new Virginian’s experience new allergy symptoms including Asthma. Dr provided some allergy medicine and an Advair inhaler suggesting that if the allergy medicine did not affect symptoms, use Advair 100/50 inhaler twice a day. The allergy medicine had no effect; however, Advair improved my symptoms.
This treatment continued through to Sept 2003 when I returned to my GP. My symptoms returned to pre-treatment levels and with a history of traveling to less developed areas Dr prescribed a chest x-ray “as a precaution”. Advair was also increased to 250/50. Symptoms improved initially but then to return to pre treatment levels.
The results of the x-ray indicating enlarged lymph nodes “Stable Mediastinal or Hilar Lymphadenopathy consisten with Sarcoidosis”.
I then had ACE blood tests with results of 39 U/L (limits 8-52 for what its worth) and a CT scan (Oct 03) with the following key points: “lymph nodes enlarged from 1 to 1.5 cm range seen in the prevascular space, the AP window, the right paratracheal region, subcarinal region and both hila. The lungs themselves are clear with the exception of a single small pleural-based module on the left. Most likely diagnosis given this appearance is sarcoid. This would be an unusual distribution of lymph nodes for an infectious etiology or lymphoma although cannot be entirely excluded”.
These results were taken to my Pulmonary DR and my Advair was increased to 500/50 and Flonase 120 was also prescribed as a nasal spray to help reduce sinus flow. The plan was to monitor my situation with a follow-up CT scan in 3 months.
Through Nov, Dec, and Jan with Advar 500 and Flonase 120, my symptoms seemed to be improving and I was starting to believe that I was in the “30% that recover from Sarcoid on their own”. I should point out that in addition to the inhalers/nasal spray, I was very busy working indoors most of the daylight hours and when outside, I was always well covered (it was cool in northern Virginia this winter).
The exceptions to my situation during this period are as follows: I spent all Christmas day hiking outside in the sun (and its reflection off the snow). The next day I was very sleepy and spent most of it on the couch. At the time, I assumed that I was tired after a physically active day and old age was catching up with me. I was also in Cape Town (SA) and Tanzania for 10 days in mid Feb (their summer) for holidays. Because of malaria and concerns for skin cancer (I have many moles), I was covered head to toe in light fabrics but spent most days outdoors. I felt physically tired but assumed it was jetlag and physical activity. I also felt very tired for a few weeks after my return, which I assumed was due to jetlag. In the past, I had recovered from 10 hrs of jetlag in 1-2 days, but this time I just assumed this was one more casualty of age.
Second CT scan in Feb 04 indicated a progression of nodules in my lungs. “There has been interval development of numerous pulmonary nodules. These are somewhat clustered around the hila bilaterally, but can be seen scattered throughout both lungs. The majority of these are in the 1-2 mm range, however the largest measures approximately 8 mm.” On the positive side: “lymph nodes are relatively stable and no new nodes are identified. No auxiliary nodes are present”. In conclusion “This has clearly progressed from the prior study. This appearance would be consistent with developing pulmonary sarcoidosis, assuming that the initial diagnosis of sarcoid is correct”.
With this development my Pulmonary Dr was anxious to get to the bottom and convinced me to have a Bronchoscopy. This was done in early March with all results were negative. Bronc prep included more blood tests including ACE, which was down slightly to 27 U/L (8-53) from 38 U/L 3 months earlier.
Pulmonary Dr was even more anxious to conclusively know what is going on and recommended a Mediastinoscopy to get a Lymph node biopsy to see what is going on and to make sure there is no Lymphoma.
This is when I started to take this more seriously and began my own analysis to better understand what is/will be happening.
My first priority was to find out what is actually happening. The bronc results also tested negative for TB etc, so my primary concern was to determining if it is a Lymphoma or Sarcoid. I checked and the Bronc performed did not attempt to gather any lymph sample. Here is a summary of my activities in the last 7 days.
1)Started to collect a detailed paper trail of my test results, medication and my symptom observations.
2)From research I understood that among the initial Lymphoma steps is to see how the other lymph nodes are doing. Likewise, I also wanted to see if sarcoid had gone to other organs. So, 3 days ago I had my third CT scan which included my abdomen for the first time. I expect the results in the next 2-3 days.
3)Because of my past symptoms of burning eyes, I just had an external eye exam. Results indicate no visible symptoms or anything that is a suspicious candidate for a biopsy.
4)I have also completed another series of blood test this week to see my ACE level and to also check for markers for possible Lymphomas. (pre MP awareness so no vitamin D tests included).
5)4 days ago, I read an article in SUSC pointing to SARCINFO which is when I began to connect the dots on the affect of sunlight and my symptoms. I also started to take steps to avoid sun and seafood. I also noticed that many of the symptoms associated with increased 1,25 D levels are also present (muscle cramps, stiffness, loss of balance, memory loss, nasal/sinus congestion).
6)2 days ago, I printed out copies of the reference articles from your web site and took them to my Pulmonary DR and GP for their review prior to my next scheduled meetings.
My next steps are as follows:
1)Stay out of the sun and avoid seafood.
2)Continue to study sarcoid and related info.
3)Review the details in the MP.
4)Get my latest CT scan results to see if there are symptoms of Lymphoma in other nodes or Sarcoid in other organs.
5)Review my CT scans with Lymphoma expert on Tuesday to (hopefully) confirm that this branch is a low probability.
6)Find out if my GP or Pulmonary Dr will be willing to try the MP approach. (at least prescribe the vitamin D tests).
7)Post my results here to get additional insight on the sequence of my next steps (results dependent).
Thanks all for taking the time to read all this. Hopefully, my experiences can also be of use to someone else.
Sincerely,
Dan in Northern Virginia.
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Yes, you are right to suggest consulting Doc immediately about any cardiac symptoms, but you will need to be able to point Doc in possible directions if you expect concrete help.
