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My 23 year old son has be confirmed and diagnosed with Collagenous Gastritis. We are in SC and have been sent to MUSC who referred us to the NIH and have still had no call. All we get is omg, this is extremely rare! I have a sick kid who needs help (there is none) and his emotional state is getting worse and pain and symptoms increase and no one can will offer help. How do you go about finding someone who wants to research and help a patient with an rare disease? The treatments that are available have proven to not work, make the illness worse, or perhaps help for short periods. Any ideas would be appreciated. Thank you.
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I have never had growing pains but it seems like that might be a way to describe them. I have tried a heating pad but it did not help. Advil seems to help sometimes but I am told not to take ibuprofin. I get these leg aches several times a week now. Thank you for your recommendations.
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Hi @epvb - you mentioned you have muscle aches and pains in your legs.... I expierence this randomly at least 4 times a month. They feel like growing pains but I am NOT growing. Is this what yours feel like? For relief I would rub rubbing alcohol (with a cotton ball) on where the pains is when I have it available then lie down. Heat also “helps”. Hot yoga is something I am trying to do more that seems to reallllly help bloating / body cramping. I hope this can help you and others.