RDT

Yeah the neurologist wasn’t worried about retesting the results. Once initial results are positive and EMGs are positive, they don’t question the LEMS diagnosis. But issue is, with LEMS we often have other concomitant rare diseases that might be present with new symptoms. So something to be on the lookout for is what I was told.

Definitely #4 depending on activity. Some days I can walk and others I can’t if I’ve done any activity.

Hi Tim,

Yes, weeks after contracting EBV (Epstein Barr Virus) is when I started displaying my LEMS symptoms. There’s many in the medical community that have published the possible linkage of virus-induced autoimmune disease. Here’s one such article:

https://pubmed.ncbi.nlm.nih.gov/8994870/

Initially tested positive for both types (P/Q & N Type), retested a year later only P/Q type & tested again both positive again. Just got retested last week and now the Mayo autoimmune encephalopathy panel removed the P/Q & N Type from their panel??? So who knows?? Regular EMGs are negatives but SFEMG are always positive.

I too have dysphagia and atrophied vocal cords from LEMS. 😿

I was on plaquenil for years before lems diagnosis with great results. I only discontinued when I started chemotherapy. Once completed I resumed but had cardiac side effects unfortunately. Just started Imuran and waiting for it to work😿 Dr said could take up to 6 months 😡

Shoot missing this one too. 2nd time a Dr. appts falls on our social. Sorry.

My old neuro in VA was supposed to be writing up a case study for publication on my rarer form of lems. But after I developed a severe case of aseptic meningitis from ivig, they stopped.

all your personal identifiable information will be de-identified for distribution to the masses.

what a great honor that your case can help others learn from…[Read more]

I get same response from the doctors too. I usually tell them that I prepare for these visit with bed rest beforehand and by not having any other appts or even going out a few days before the visits and then I’m wasted after the appt. and usually 1-2 days  after it too.

For me, my lems weakness is NOT bilateral.
My worse areas that I require sp…[Read more]

I’d like to hear about others traditional and non traditional medications or alternatives used to treat their lems symptoms.

So timely!

I just had a FU visit with my Neuro yesterday. As I’ve failed multiple standard LEMS treatments, looking towards next steps.

Since I have several other autoimmune diseases & other medical conditions/diseases as well. They are trying to determine if one immune suppressant can cross hit some of my other conditions.

Right now, they a…[Read more]

Responding a little late, but cramping and fasciculation is huge manifestation of my LEMS that I deal with almost daily.

For me it’s most severe in my legs/feet, but also affects my hands, buttocks, arms, face, eyes and tongue. So for me it’s pretty severe. It’s worse after any activity, walking, talking etc.

The only thing that has helped me is…[Read more]

I developed aseptic meningitis pretty much immediately after my initial IVIG induction course, which I received in the hospital.  Finished on a Friday afternoon was in ER by Saturday. I couldn’t turn my neck, severe vomiting, severe migraine and was in and out of consciousness. Spinal tap confirmed diagnosis and was fortunate to get immediate tr…[Read more]

I took 3,4 Dap for about 6 weeks and like Linda felt way worse than baseline. I had the expected tingling of my face, but my POTS got drastically worse. I developed terrible Long QTs and had a suspected seizure episode. So obviously Dr. discontinued me off it.
For me personally, it did not improve my lems symptoms at all before stopping. Not sure…[Read more]

Yes, my generic mestinon tablets are scored as well for easy cutting, but each time I did that it hurt. Turns out ENT said I was cutting up my larynx. Since I have atrophy of the vocal cords & larynx with weakness of the trachea from my LEMS, my muscles weren’t strong enough to push it down. I’m even on a soft food diet since I choke so easily &am…[Read more]

I’m not doing Ig therapy and therefore continue to get tested regularly to see if the treatments I am doing are helpful in being down antibody levels.

Oops I copied & pasted mayo findings which distorted comment. Tried to edit/delete, but wouldn’t let me. So here’s what I was trying to write now without the copy & paste error portion. Lol

 
<p style=”box-sizing: border-box; margin: 5px 0px; direction: ltr; word-wrap: break-word; caret-color: #777777; color: #777777; font-family: ‘open san…[Read more]

I did a trial of IV Rituximab last year (2019). I personally felt 100x worse than my baseline and couldn’t continue with that therapy at all but I also have very complex issues in addition to my aggressive form of LEMS, so that might play a role.

I’ve tried several immunosuppressive medications over the years and I’d say for me personally the o…[Read more]

For me personally, giving up dairy several years ago was huge. I have autoimmune arthritis and all my joint swelling went away within a week of giving up diary!

If you love milk then definitely try OAT MILK! It was a huge game changer for me taste wise. After years of drinking but milks, I found it Closest to diary taste in my humble…[Read more]

I’ve been on mestinon since diagnosis in 2017. For me personally it does nothing for my muscle weakness or muscle spasms, but has been a blessing for my POTS which can be one of the LEMS dysautonomia manifestations. Helps with my tachycardia and prevents me from passing out.

My only complaint I have is the tablet texture/size. When my LEMS w…[Read more]