Lambert Eaton
 

May 2011< Like it happened overnight…. I went from an active runner/healthy person to fatigued/bilateral leg pain/weakness and lethargic
After a year ½ of bilateral leg pain, weakness, and POTS like symptoms…. After seeing over a dozen neurologist/rheumatology all shrugging their shoulders not able to find what’s wrong with me… A highly recommended neurologist out of Norfolk VA finally ran the correct blood work (Mayo Clinic’s Paraneoplstic Panel) on me. Just got the results last week with the red flag.

CALCIUM CHANNEL, AB P/Q TYPE 0.01 nmol/L <=0.02
CALCIUM CHANNEL, AB N-TYPE 0.38 H nmol/L <=0.03

So my N-type is the red flag. 10x higher than the normal range. Through the internet I see this N-type AB is likely to be associated with Lambert-Eaton Syndrome which can be associated with Small Cell Lung Cancer. I haven’t seen the doctor yet to discuss the results. I did smoke for 15 years. In that time… I was not a real heavy smoker.
So, anyone here have LEMS? Is your LEMS associated with SCLC? How did you get your diagnosis and where? Did you get the Positive for VGCC? What are you doing to cope? The most important question I have – Did any of you experience leg pain? My pain was in both legs in the butt, hamstring, calves and foot. It never goes away. It constantly aches like I just hiked 30 miles. There are actual knots in my muscle. The pain is worst in the morning getting out of bed. Please reply if you have LEMS. I am in need of some guidance.

I'm sorry I don't know much about LEMS but you may get some useful replies if you post in the autoimmune or neuropathy forums.

I have had lung cancer and know a little about that and I don't think you have SCLC. It is fast growing and spreads aggressively and if it started 1 1/2 years ago with your neuro symptoms I suspect you would be having some symptoms by now, cough, shortness of breath, weight loss, etc. It starts in the bronchioles (airways) and I think that would cause a cough pretty early. I'm actually not sure if you could have it that long and still be alive.

I saw that 50% of LEMS is associated with cancer of some sort so the doctor should suggest a CT scan or other imaging just to be safe when you see him. If he does not its probably because he knows enough to know you don't have it.

Many of the people here know a great deal about these disprders, I hope you find some answers.

judi