[Todd Fringer]

Hi Prince, thanks for the reply and explanation. I’m a disabled veteran receiving care through the VA. Currently an inpatient at the Minneapolis VA Hospital for unexplained muscle weaknesses. My Neurologist have never had a LEMS case at this VA. Diagnoses complicated because I’m a high level incomplete (C1) Quadreplegic but can move legs & left arm, currently not walking. Also had stroke with service injury and TBI. Unfortunately I don’t have my specific antibody levels from VGCC test. I’ve requested so hopefully i can get them. I had EMG (neg for LEMS standard) although I’m unsure if results are valid because of the extensive nerve damage and nerve response i have. Again a question I can’t get a definite answer to.

After positive for LEMS in July, i was put on a trial 3,4 DAP which had excellent results. For 5 weeks my muscles worked as per my normal, then I contracted pneumonia. For the 4 weeks of pneumonia treatment and 3 weeks after the 3,4 DAP was not affective. Now because its not helping, Neuro said I don’t have LEMS and they don’t know why my muscles don’t work at times.

Very frustrating. I’ve researched for hours trying to find the answers. What I do know is my body. One thing I’m sure of is there’s days that I can’t touch my face or stand up which is opposite of my normal ability.

 

 

[Todd Fringer]

Greetings to everyone. My name is Todd. Career Army retired in 2006 from severe injuries which resulted in Quadriplegia.  I live in the Upper Mid West, Wisconsin. Symptoms first appeared in July 2010. I was diagnosed in November 2011 by the VA via blood test and symptoms. Medication worked great for 8 weeks then became less affective more often. So VA Neurology decided to administer the EMG. Which of course showed I didn’t fall into the LEMS range- how could I, my nerves are extremely compromised. They said the EMG would still work as if I had not injuries. **** *** ****?

Fast forward to July 2021. While an inpatient at the same VA for PT/OT  rehabilitation, I went from walking 160 feet in Friday ro not being able to stand up on Monday. A older Neuro Dr simply asked me what I thought was going on. I said I believe I have LEMS- and he actually listened. Sent blood test to Mayo that day. Two weeks later results came back positive.

Thank God for the FDA approval of 3,4 DAP in 2018. For me its been very effective. However, 3 weeks ago I had pneumonia.. Since then my symptoms have returned as if I wasn’t taking 3,4 DAP. Super frustrating when my one good arm can’t even touch my face.

Oh, I’m cancer and tumors free. There’s always a Silver Lining.

Hope to connect with everyone whom wants to expand knowledge, share stories, give advice and mutual support.