Good Afternoon: I am new at this, and just wanted to know if there is anything I can do to help with the pain that comes with this disease. I failed the T & T. Treatments and was denied by insurance for IVIG. My doctor is now going to appeal the claim. I am a chronic leaker. I take 2 fluid pills in the morning and sometimes one in the afternoon when I begin swell more. I have not been able to wear my wedding band in 5 months. And had to buy new shoes because my feet swell so bad. Since my terrible episode in May 2011. My legs have not felt normal since then. They feel like that I have sunburn of the skin and my muscles hurt all the time. And they too swell. If anyone haves any suggestions please let me know. I am open to try anything. I will keep the hope and faith that my insurance company will allow for the IVIG. This website has helped in coping with this. It really is hard to stay focused when you feel this way. People don't understand how we feel. Because we look normal like we don't have anything wrong with us. Thanks,

I am so sorry to hear about your condition. I've had it for at least 12 years, and fortunately have had only two major episodes, but many times with more minor episodes. Your are very fortunate to have seen Dr. Greipp. There is a major study being done at the NIH. I did not qualify, but hopefully, they will find something to help all of us. I saw a Dr. In Philadelphia, PA two weeks ago. It was the first time I've seen a Dr. who has actually had another patient with SCLS. Please hang in there, and been an advocate for yourself. Keep trying to get answers. I am not a medical person, so have no medical advice. Maybe someone else can help you. Prednisone has helped me, but unfortunately you did not have good experience with that. Good luck to you, I will keep you in my thoughts and prayers. It is so frustrating to have something so rare. Eileen

*Thank you so much for the reply. I am trying so hard to keep my faith that something will happen to help me. Annamrie

Hi AnnaMarie, I have nerve damage due to compartment syndrome. I take gabapentin for the discomfort. I also have tramadol for my knee and ankles to use as needed. I twist them frequently. Hope things go better for you. Rita

Thank you Rita I will talk to my doctor next week about this. I did take Tramadol early on before the diagnosis. That is what my legs feel like the nerves are damaged. It makes it very hard to walk some days. And my kness tend to pop out at times when walking. AndLord knows my ankles well there are days you can not see the bones. Annamarie

Annamarie Arturo has several of our Doctors letters for assisting CLS patients with IVIG approval. With all that has developed in the last year with IVIG, it makes no sense for a CLS patient to go though what we had to. Those of us that went though the early stages of CLS knowledge, had to endure what you are experiencing now. Thanks to Arturo, the IVIG treatments have made life normal. Arturo can help on this one. Walt

Thank you so much, I just sent an email to him. I sure do appreciate all the help the members have passed on to me. I am new at this and just started to blog this week. I became a member in June after diagnosed. But I had not accepted that I had this disease fully. I am one who will work 60 plus hours a week. And now find it hard to do this. For me I am always taking care of others and never taking care of myself. My job requires much travel, but I now find myself needing rest more often. Again thanks to all that are helping me!! Annamarie

I have been reading through this with great interest. I was just released from the hospital on Wednesday and am going to see my hematologist this afternoon to see if I can make the switch to IVIG. I have no idea what to expect -- but Theophylline and Terbutaline are not working and the episodes are a weekly occurrence. It is heartening to hear that IVIG can make such a positive difference, and for that I am grateful. At the same time, it also seems as if I'm embarking on a daunting undertaking that will take some time to resolve. Best of luck, Annamarie. Please keep us up-to-date about your progress. -- Mark

Thanks so much I am in the hospital had another attack, not as bad as the first my fluid is coming off but BP still low. We are on our 3 appeal with ins. The hospital is getting involved this time. And I did my appeal the day I was sent to hospital from my doctor. Thanks for everyones support Annamarie

Just would like to thank you so much Rita. I was in the hospital with another attack last week. But now I am at home resting. I talked to my doctor about Gabapentin and he was more than happy to start me on it. This has made a huge difference in how I feel with the pain. It has been so nice to have some relief for a change. Thank you so much. Annamarie