Hello All, This is my first post and I would like to thank everybody for this great site which has been a fantastic source of information. I have recently been given a working diagnosis of having SCLS but there is some further checking through some blood results needed. Recent mild attacks have not resulted in increased albumin conc but other factor indicate SLCS. We are still looking to blood tests from my earlier far more series bouts which seem to fit very well with the syndrome. It seems in the UK this disease is totally unknown and we are way behind the States and France. Will post again when I have more information. Anyway I have been on gabapentin (neurontin) and nortriptyline since 2008 due to nerve damage in my feet caused by my first bout. Now that I have the SLCS diagnosis I have been put on terbutaline and uniphyllin to see if this stops the bout I have been getting. I have found that this makes the nerve pain in my feet much worse and was wondering if the asthma drug are interacting there other drugs or simply make the pain worse. Has anybody else had this experience? Thanks again. Cheers, Kevin

Welcome to our SCLS community, Kevin! I hope for your sake that some diagnosis or another is confirmed soon, so at least you and your doctors will know how to proceed. In the meantime, please direct them to this site and particularly to the "Disorder Details" and "Disorder Resources" sections, so they may catch up with the state of knowledge. (You can also print out those pages and hand them over, demanding that they become part of your medical records.) And if it's any consolation, SCLS in the U.K. has been reported previously in the medical literature, and we even have another patient in this community who hails from the U.K., see _SystemicLisa._ As to your question, several years ago, when I was taking the same medications as you are now, I did not have your experience. The gabapentin worked just fine to lessen the pain in my hands. (I had lost all feelings in my feet, so they were not a source of pain.) And if your diagnosis is confirmed and you cannot tolerate high doses of terbutaline and uniphyllin, or they fail to prevent a future episode, then your doctors should put you on a therapy of monthly IVIG. Good luck to you!

hello kevin sorry to hear about your recent diagnosis.:-( I have logged on due to only last week, having a leak at the moment i am awaiting my blood results for my thophilline levels to see if my doses of medication needs to be increased. I myself have found the site comforting regards to information and also knowing your not the only one out there. my symptoms this time started with a cold , spinning sensations and severe muscle & joint pain & cramps i then experianced very slow mentation which affected my communication & movement ability, lightheadedness & going very floppy with extreme fatigue, my weight incressed from 65.5kg to 84kg which left me with a swollen abdomen fingers & eyes and face. On day 7 after the start of my leak i was feeling ok with just fatigue, but in the afternoon i then experianced tongue and throat swelling & high respiratory which affected my voice so took myself to A&E where i was immediatly given iv steroids & piriton & admitted for over night. I have in the past been taken to A&E just after a leak for the same problem and been given 2 shots of adrenaline also, so i think this could be a result of my immune system going a bit awall after i have a leak and i just wanted to make you aware of this, if it's of any help. Also at the time about 3yrs ago which may have been my first leak i lost the use of my left foot (foot drop) and was in a wheel chair but i also had muscle weakness for about a year in my hands & legs and still do have a slight weakness in my right hand. At the time they thought i had ms but tests and all other tests they did for neurological & other diseases were negative. But at the time my neurologist decided to treat me with 3 days intensive iv steroids which he prescribed to his ms patients, this had a positive affect which would have stopped me leaking at the time, I have also been admitted to hospital with severe abdominal pain with no know cause about 10 best wishes & good luck with your treatment. lisa

Hi Lisa, Sorry to hear your recent problems. I would like to know where your based and my doctors would be interested in contacting yours to collaborate. Have you been offered IVIG? I was offered this recently if the asthma drug either don't work or the side effects become too bad. Regards, Kevin You could contact me on kevinrrogers@yahoo.com