Sometimes I think my doctor thinks I'm nuts, but there are times I cannot physically breathe because it feels like my tongue is swollen where it connects to my throat. Two months ago I was diagnosed with Lhermitte Duclos Disease. Although neurological articles are now available I am looking forward to chat with other patients as the articles do not give any information about how patients are feeling and if they are always surgical treated. My doctors here do not know much about the disease and advise to wait. In te meantime I am suffering from terrible headaches which sedatives hardly enhance.
Any information is welcome.
Perhaps we can start a patients organisation. I found this page somewhat resourceful for what I was looking for. I am deciding between fractionated steriotacktic radiosurgery and surgery. I am interested in opinions from those having it done. Im a 47 yr old male from the Asian Subcontinent who moved to Canada about 10 yrs ago.