I was just reading above and noticed you wrote adult MS, the dr was thinking adult onset muscular dystrophy. But now he does not think that. If it is Paraneoplastic have you ever heard of people getting better at that point?
ECD is erhid-chesters dieasese I think its similar to churg-stauss, at least in the same catagory. I did mean I thought lymphoma would be easy to diagnose from like a blood test, but I guess not.
I don't know what "ECD" means.
What would be easy to diagnose? Cancer/Lymphoma? Not always.
Well, keep me posted.
I have an appt. with one next wed. They were going to wait until august but I called to see if they had my medical records and they did not, so now they got me in at the earliest appt.The Drs I saw at Penn State think maybe Paraneoplastic syndrome. Had mentioned ECD, Erhid-Chester? And a few others but they think the paraneo fits the best at the moment. I was wondering about lymphoma because my lymphnodes under my jaw have been enlarged and painful for over a year. Is it possable that they could have missed that for so long? I mean to where its causing other health, neuro, cardio, problems? I would think that would be one of those illnesses that is easy to dx by like a cbc but you would no more than me.
Adult MS? What? That makes no sense.
Find out how big the lesions are and get them biopsied if they are big enough ASAP!! Also, get a referral to a Pulmonologist.
Sorry I haven't gotten back to let you know whats happening. I am so confused at the moment, my CT showered 3 lesions in my chest/lung area (not sure if they are on the lung or not, when nurse called she simply stated what the CT showed not exactly where). My Dr seems to think it is 2 different dxs. I go see a Neuromuscular Dr on Monday for more testing ie.- spinal tap, blood tests, etc... (I get the impression they are looking for adult onset MD or something like that) I don't really think his theory is correct, I am wondering if lymphoma or something could cause my symptoms? or as I have Barrett's Esoph., if the cells could have traveled?