Tips for Dealing with Pain in Lambert-Eaton Myasthenic Syndrome

[RDT]

<p style=”text-align: left;”>I’ve tried everything listed in this article and nothing seems to work.</p>
I have a rare version of LEMS. It originates in the spinal cord and brain stem. So only way for it to come back positive is to perform either single fiber EMG in face & eye or higher voltage regular emg around neck & shoulders. Majority of NM neurologist don’t even know about this form or these emg techniques. Had to travel several states away to find an experienced NM Neuro knowledgeable on this.

I have both autoimmune & paraneoplastic forms.

I have terrible neuropathy throughout my whole body from all 4 extremities to my eyes,  inner ears and even throat!

I also get terrible fasciculations, muscle spasms and severe cramping like horrible Charlie Horse cramping. Was wondering if any LEMS patients here get this as well and what they do for it other than what’s recommended in the linked article?

I do have both a TENS unit & PEMF device that I use with minimal relief.

My hematologist has recommended as last course option to try Ketamine Infusion Therapy for the neuropathic pain. Hopefully will be doing that soon!

Has anyone tried Ketamine Infusion Therapy for Chronic pain? It’s quite expensive but I’m willing to try anything for a better quality of life at this point.

Currently undergoing chemotherapy and it’s drastically either reduced or normalized  my LEMS labs but I’m still very much experiencing all the LEMS symptoms. But I guess it takes longer than 3 months of treatment.

I’d love to hear everyone’s feedback or if experiencing anything similar to me??

Thanks so much!!🙏🏼😇