Dr. Check's name is mentioned in almost every search I've ever done on this condition. Is there anyone here that does not go to Dr. Check? I am located in the North East and was lucky enough to find a nephrologist who came across some research and started my treatment plan. My primary prescribes the adderall now, but I've often wondered if I would get more insight or a more tailored treatment plan from Dr. Check or a specialist. Thoughts on this?
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I just wanted to add to the discussion that there are other doctors who would treat this disorder but the medications they use are not as effective. I have known many people taking Spironolactone (or brand name is Aldactone). As I nurse we used this for Congestive Heart Failure and high blood pressure. It has not been nearly as effective as the Adderall or the Dexedrine in ridding the body of fluids, decreasing pain and helping with some of the other symptoms associated with the syndrome. The side effects are a mile long as well, unlike with Adderall or the Dexedrine. I wish it did work as well because it would be easier to get.
That is a great question as I know it is such an inconvenience for many of you who have to travel great distances to see Dr. Check or Dr. Cohen. Like Cathy, I would not have been able to get either the Adderal or the Dexedrine without a diagnosis of ADHD. For myself, his insights into this disorder and his expertise with this syndrome were worth the visit. If you are doing well on Adderal and feel it is managed well, you may decide not to take the trip. For myself, I sometimes do better on one of the medications than another and have had to switch every year or so. He is very informative yet does not talk down to you. He became interested in this disorder because of a relative so he began his research to help his family member. The medication works better than any of the other treatments overall. It is a trek there but he will spend time with you and trust me it is an experience you will never forget. Good luck.
I see Dr. Check as well. I live in NYC and it is not easy to get my prescriptions because Adderall can't be prescribed off-label AND prescriptions from doctors that aren't licensed in the state of NY can't be filled here.. so I continue to see Dr. Check and have to go fill my prescriptions out of state every month.
Dr. Check is the only doctor I have found who treats idiopathic edema with Adderall; before I was diagnosed I went to a wide range of specialists and no other doctor I saw suggested it as an option. At Johns Hopkins they took my case to the board of the endocrinology department and the only option they came back with was Spironolactone. I am very surprised and confused as to why Adderall as a treatment for this condition isn't more well-known. If this could be recognized as an on-label use for Adderall it would greatly benefit us and many others that may be undiagnosed or untreated.
When you ask if you would get a more tailored treatment plan-- do you feel your current treatment plan is not entirely effective? It might be worth making a visit to Dr. Check at least once just to talk to him and see if he would recommend anything different based on the results you've had with your current plan. It sounds like your doctor is open-minded and might be willing to prescribe a different dose if Dr. Check recommends it.
I also see doctor Check. I’m in California so no adderal can be prescribed “off label”.The only thing it can be prescribed in CA for is ADHD by a Psychiatrist. So you are lucky your primary can prescribe it. Personally think you’d find it interesting to have a chat with him yet would defer to Eileen for her thoughts since she’s had the most interaction with Dr. C.