Support Group for Lambert-Eaton Syndrome

Allergies, blood and immune system
1

Hell-o Lambert-Eaton friend,

So sorry to hear of your diagnosis. My husband was diagnosed with LEMS in 1998 and had severe symptoms since 1995. They manifested themselves, like you, with severe stress....his mother's mental health collapsed and then she died. He did not have the lung cancer or any other cancer so far that is. Dateline NBC here in the US had a special in around the same time he was diagnosed with it. There was a doctor, Internist, on the show who we have been in contact with this whole time. We are trying to create a support group and i would like to invite you to email Dr. Parsons at **** and i am sure he would be happy to respond to any questions you may have. Depression is a huge obstacle in men especially. LEMS strips away your ability to be the man you would like and could be!!! This illness has ravaged my husband. He use to jog on the beach in southern california and lift weights and visit people and travel and now he is home most all the time. Rarely goes anywhere, although, he is on some helpful meds. We did not realize until now that there are so many with LEMS! My husband and I plan on creating a non-profit organization to help underpriviledged people to get to a physician and be able to receve needed treatment. We will let you know when that happens. In the meantime, contact Dr. Kevin Parsons at that email address and go from there. Feel free to contact my husband and i when you need support or someone to talk to okay? Our email address is **** and don't forget the third \"e\" in the second \"zee\" of the address. Are you married? Kids? Where do you live if you don't mind us asking. Take care and know we care! :D

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2

Hello,

I know you posted your post a while ago.  I hope you are still monitoring this site.  My 63 year old husband was diagnosed with Lambert Eaton in November 2014.  He has had symptoms of weakness in his legs and back since August 2014.  He was also diagnosed with Merkel Cell Carcinoma in the lymph nodes under his right arm.  They were not able to find the primary site of the Merkel cell.  He is scheduled for surgery to remove the affected lymph nodes on January 13, 2015.

Like your husband, my husband was very active and exercised at least six days a week.  He jogged, played basketball, lifted weights, rode his horse, and even did a little zumba.  Now, he is on a walker.   He still goes to mass and  teaches a Confirmation class once a week at our church, but does very little else.  It is very frustrating for him and for myself.  This is such unknown territory for us.  I am hoping to contact others who are going through this.

Take care,

Annie

3

I am wondering whether I have got LMS, The neurologist thought I had myathenia gravis but after nerve conduction tests he isnt so sure so I have got to undergo more tests. I've been googling and I have a lots of the symptoms. Extreme weakness,unbearable dry sore mouth(major sign of LMS) breathlessness,difficulty in swallowing amongst others. I know I havent got the lung cancer part as over the past year I have had a couple of chest xrays and a chest CT following a chest infection, I dont want this syndrome but would been glad of a diagnosis so I know its not all in my head