I am going to visit the NIH April 25/26 for a second round of testing. The NIH has started a collaborative study using infrared photography and temperature patches to study the skin capillary blood flow in SCLS compared to controls (normal). Dr. Druey also suggested a Cardiac MRI, which I will get while there. Alan and Jeff, could you please e-mail a phone number so we can get together Monday evening, if you can. Arturo is tied up Monday, but will see me Tuesday. I'll give you my cell number also. I start testing at 7 am and I'll let you know what time I am done Monday.

I have just sent my records to NIH to see if I qualify for the testing. Hopefully, If I am accepted, I will be able to meet another person with this condition. I live in Cape May County, NJ. I've learned so much since finding this site. Good luck with your testing. Mary Eileen

Hi Walt I did the testing at NIH during rhe first week of March. The week of testing was easy. They scheduled me for the MRI first thing Monday morning. The temp patches were placed on my chest and back with a small device that you will carry with you for the week. Infrared photos daily. That part of the test requires you to sit very still for 30 to 40 mins. Overall i found it to be a plesant experience. Also got to meet Auturo and spend some time with him.....very rewarding experience. Let me know if you have any questions about my week there. @Mary Eileen. Hi. I live in South Jersey also...Sicklerville. If you have any questions about the testing that I went through at the NIH please email me at your leisure. Thanks Glenn

I would be happy to e-mail you, but I'm new to the site, and don't know how. My daughter lives in Woodbury. It would be nice to discuss your experience. Mary Eileen

Mary Eileen Here is my email address glhutt@verizon.net We can exchange contact info this way. Glenn

Thanks for the info Glenn. I'll e-mail you with other questions. Walt

I am interested to know how things went at the NIH. I'm still waiting to hear if I qualify for the SCLS study or not. Mary Eileen

Update on NIH visit 4/25 and 4/26 2011 I could only go 2 days to the NIH. Dr. Druey is always helpfull on scheduling. Since I could not do the 4 days, he asked if I could do the Cardiac MRI and laser/infrared scan. MRI was taken at Suburban accross the street and the scans each day. Joe was the technician and provided me with a snapshot of the scan after our return. The scan looks at blood flow and then they shut the blood flow off and then resume for response of the capillaries. My best explanation of how to put a tourniquet on and release it quickly. I am due back at the end of the month. Dr. Druey goes to all efforts to work with you and the schedule. Everything is for your benefit. Nancy and I got to talk with Dr. Druey for an hour each day. He is very easy to talk to and updated us with his CLS research so far. Nina and Donna are also very nice and helpful. The great part of the trip was to have lunch with Arturo, who looks so much better than our last meeting. His IVIG has done wonders. Arturo is definitely quicker getting around than he used to be. We also had dinner with Jeff, his wife Alicia and Allen. This was another highlight of the trip. It was our first meeting face to face. After all the e-mails and rareshare replys, I got to sit down with them and just talk. Thank you guys for the great time. When I come back though, we won't talk about the CLS, just normal things about us and our families. It was hard to sit down at the outdoor restaurant and realize that we all look normal, but have such an extreme syndrome. It was an unbelievable experience. The best thing about this trip to the NIH was that I was not worried about having an episode away from home. I really feel like the IVIG has relieved a lot of my past burdens. So if you are thinking of visiting Dr. Druey, don't put it off. Trust me.

Walt and group, Thanks for the update on NIH. I am scheduled to go the week of June 6th. Finally got it on the calendar. Sounds like I am going to be there the entire week. I have traded emails with Arturo and hope to catch up with him while there. For those of you I haven't formally met, my name is Marc and I live in North Carolina. I had a severe attack in September and was diagnosed by Dr. Greipp in October. I have been reading a lot on this site and appreciate the sharing done by everyone. I finally have broken through to respond and join in the discussion. Thanks to Walt, Robert and Arturo, as I have either talked or traded a number of emails with them in the past months. Their support has been tremendous. In the next few days, I plan to open a new thread and formally introduce myself.

Marc Let us know what testing you receive at the NIH. It will help the next, and the next..... This is a great start for you. Glad you decided to post on the site. It will be easier now. Remember, even though we have support from family and friends, this site provides support from other CLS patients. Like they say, the only dumb question is the one you don't ask.

I am returning to NIH for testing as well. I arrive May 30th and return June 3rd. I am anxious for new tests and what they will show. Keep praying for a cure!! So happy Walt and Arturo are doing soooo much better!! Hopefully we can get together while we are there. Dr. Druey is great! I am looking forward to visits with him. Arturo, if possible you can E-mail me and let me know if you will be available. Take care everyone!