Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 On Feb 1, 2004, at 12:49 PM, Lynn D wrote: > > > Welcome to the group Sharon! > Lynn > > > Thankyou Lynn! Hope to meet you soon. Sharon > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.572 / Virus Database: 362 - Release Date: 1/27/2004 > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > The materials and information contained in this message are not > intended to replace the services of a trained health professional or > to be a substitute for medical advice of physicians and/or other > health care professionals. The International Still's Disease > Foundation is not engaged in rendering medical or professional medical > services. You should consult your physician on specific medical > questions, particularly in matters requiring diagnosis or medical > attention. The International Still's Disease Foundation makes no > representations or warranties with respect to any treatment, action, > application, medication or preparation by any person following the > information offered or provided within this support form. > > ion by any person following the information offered or provided within > this support form. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 On Feb 1, 2004, at 12:49 PM, Lynn D wrote: > > > Welcome to the group Sharon! > Lynn > > > Thankyou Lynn! Hope to meet you soon. Sharon > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.572 / Virus Database: 362 - Release Date: 1/27/2004 > > > Visit the Still's Disease Message Board > http://disc.server.com/Indices/148599.html > > The materials and information contained in this message are not > intended to replace the services of a trained health professional or > to be a substitute for medical advice of physicians and/or other > health care professionals. The International Still's Disease > Foundation is not engaged in rendering medical or professional medical > services. You should consult your physician on specific medical > questions, particularly in matters requiring diagnosis or medical > attention. The International Still's Disease Foundation makes no > representations or warranties with respect to any treatment, action, > application, medication or preparation by any person following the > information offered or provided within this support form. > > ion by any person following the information offered or provided within > this support form. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Hi Sharon, My name is Carmen and I am residing in California at the moment. Welcome to this wonderful group. You'll be surprised at how much we all know and share. I've never had sinus problems but maybe one of us has and will respond. Where do you live? It will be nice to get to know you and you can count on us to help you through this disease. We have the mildly affected and the severly affected. Stills can produce remissions so I hope you experience them. What medications are you taking? Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi Sharon, I, too, take Enbrel and MTX. It's a good combination for me. I take 12.5mgs of MTX and twice a week injections of Enbrel. Have you changed to the once a week injections? I'm a bit nervous and a chicken to try it. Today is "poke" day for me and I always thing I shall try the two injections but never get the nerve. Those are the only medications that I take except for daily Folic Acid and once a week Fosamax. I think Marilyn is trying the infusion of a similar drug of Fosamax. If you're reading this Marilyn, have you started that yet? I hope your flare is a short one. Actually, no flares are short, right? ( Ca. Carmen > Hi Sharon, > My name is Carmen and I am residing in California at the moment. Welcome to > this wonderful group. You'll be surprised at how much we all know and share. > I've never had sinus problems but maybe one of us has and will respond. > Where do you live? > It will be nice to get to know you and you can count on us to help you > through this disease. We have the mildly affected and the severly affected. Stills > can produce remissions so I hope you experience them. What medications are > you taking? > Ca. Carmen Hi Carmen! How are you ? I take mtx and embrel. I live in Philadelphia Pa. Sorry this is so short, I'm in the middle of a really bad flare. Thanku for responding, I hope to meet you soon. Have a wonderful pain free day ! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hi Sharon, I, too, take Enbrel and MTX. It's a good combination for me. I take 12.5mgs of MTX and twice a week injections of Enbrel. Have you changed to the once a week injections? I'm a bit nervous and a chicken to try it. Today is "poke" day for me and I always thing I shall try the two injections but never get the nerve. Those are the only medications that I take except for daily Folic Acid and once a week Fosamax. I think Marilyn is trying the infusion of a similar drug of Fosamax. If you're reading this Marilyn, have you started that yet? I hope your flare is a short one. Actually, no flares are short, right? ( Ca. Carmen > Hi Sharon, > My name is Carmen and I am residing in California at the moment. Welcome to > this wonderful group. You'll be surprised at how much we all know and share. > I've never had sinus problems but maybe one of us has and will respond. > Where do you live? > It will be nice to get to know you and you can count on us to help you > through this disease. We have the mildly affected and the severly affected. Stills > can produce remissions so I hope you experience them. What medications are > you taking? > Ca. Carmen Hi Carmen! How are you ? I take mtx and embrel. I live in Philadelphia Pa. Sorry this is so short, I'm in the middle of a really bad flare. Thanku for responding, I hope to meet you soon. Have a wonderful pain free day ! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2009 Report Share Posted May 31, 2009 Welcome to the network Sharon. Your story is not unlike others diagnosedwith CMT. Thanks so much for introducing yourself. There has been a body of research done on mitochondria and CMT Type 2. There is some info in our Files section. Look through the folder Mitrochondrial Research I wish you don't have to repeat the EMG/NCV so soon. This doesn't sound right. Is there a history of CMT in your family? There are 2 much less invasive ways to diagnose CMT 1) skin biopsy and 2) genetic testing. There's no treatment for any type of CMT - yet. But some of us find that nutritional changes, use of vitamins and supplements, and some forms of exercise to be good for us. Hopefully our members will be of help and focus for you. Gretchen Quote Link to comment Share on other sites More sharing options...
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