Originally Posted by bny806
Hello, and welcome!! I believe there may be one person on here with LEMS... I have suspected LEMS with myself, however my antibodies are negative. ..
Do you mind sharing your story about your symptoms and your treatment? I get IVIG and it works for whatever I have, however I have wondered if DAP would help me .. IF that's what I have .. hopefully someone else on here can help you!
Over the past several months my symptoms include fatigue and weakness, pain hind eyes, especially when focusing on near objects such as text messages, extreme neck pain and weakness, difficulty swallowing, especially when chewing, first one eyelid drooped mostly when I was tired at the end of a long day, then both eyelids drooped, then they either both drooped or took turns. Deep wrinkles appeared in my forehead from struggling to keep my eyes open. When really tired, my mouth turns down in a frown and my lower lip gapes open, very weak legs, especially upper leg muscles, everything is heavy to try to pick up and I have difficulty opening things or holding things. Difficulty breathing at times and especially when standing still and upright. Low blood pressure that goes extremely low at times, sporadic heart palpitations and fast beats.
All these things started slowly and became worse over time. At first it was just the weakness and droopy eyes and weird heart and breathing things.
In June the LEMS test was negative.
Only in the past couple of months has the swallowing started to get scary.
In January I got five Ivig treatments and sixty mg prednisone and I got much worse. I was not able to swallow at all and had a feeding tube placed. I was tested again for LEMS while in the hospital and this time it came back highly positive.
I was put back in for plasmapheresis for five days along with twenty mg prednisone. Because i do have lems the plasmapheresis was dicey at times. it was discovered that calcium must be running during the entire treatment or my muscles clampmdown including those needed for breathing. The eye symptoms are mostly gone, the neck pain is gone and I am much stronger, although not normal.
I will not go into the bad treatment I received at Emory University in the interim of these two hospital stays. That is an entirely different story.
All in all I am much improved and looking into trying 3,4 dap to see if it will give me more strength.