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Thank you so much for this link! I often get asked at the Drs office but never have a concrete answer. Now I do with research to back it up !

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do you have the link for these lems percentages? Thanks

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YES! I just had a new consultation with a new neuromuscular neurologist, since my current neuro doesn’t have any more LEMS treatments options for me.
The new neuro plans to reach out the pharmaceutical company Argenx directly to see if their FDA approved Vyvgart could be used for me as a single use patient study instead of waiting for it to go through patient trial in LEMS population. I should find out by September. I truly hope they will consider it seriously! Will keep everyone posted since I have failed all the other traditional LEMs treatment options unfortunately. If anyone else does enroll in a LEMs clinical trial please post or message me!
thanks !!

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Yes, please please keep us updated as soon as you get any updates from Argenx. I had heard about Vyvgart but unfortunately I test AChr Antibody negative, so not a candidate. But I get these antibodies tested every year just in case. My neuro says your AChr Antibody level normally never changes but has had one patient that did so I still get checked just in case. Never know.

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i posted a response, but now I can’t find it? Not sure where it went? But in case it got deleted, I’ll re add it.
already on mestinon but it helps only with my POTS symptoms not LEMS muscle weakness/pain/cramping.
Firdapse didn’t work & caused seizure. IVIG caused aseptic meningitis & SCIG is also contraindicated due to my IgA deficiency. I’ve tried all the immunosuppressive you mentioned and then some and didn’t help. Trying to go back on Humira. Plasmapharesis helped but symptoms only stayed at bay for a week before returning, so Drs didn’t think it was a long term option. But may have to go back to it unfortunately.

i hadn’t heard about the argenx clinical trials. So I’m so happy you brought this up!! I will definitely look into this to see if I can participate in an upcoming clinical trial. I’m basically bed bound at this point since I’ve failed all other standard LEMS treatments, neuro doesn’t know what more to do. So I’ll definitely bring up this argenx trial at my next visit!!

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So I’m currently on mestinon. But it only helps with my POTS symptoms only. Nothing for the muscle pain/weakness. Firdapse didn’t work & caused seizure. IVIG caused aseptic meningitis & SCIG contraindicated because I also have IgA deficiency. Cellcept, methotrexate, Sulfasalazine, Rituxan infusion didn’t work. On plaquenil but need stronger  immune suppression. Awaiting approval to restart Humira. Plasmapharesis worked but it only lasted a week before I needed it again, so they thought that wasn’t a long term option. But may have to go back to that if Humira doesn’t work.
Steroids make my symptoms worse so that’s definitely not an option for me.

I haven’t heard anything about argenx preclinical trials ??

can you send me some info. On it ??

If I can get into their early human trials I’d definitely look into !!

super desperate as I’m almost completely bedbound at this point! Neurologist has run out of LEMS treatment options.
Thanks!!

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Sorry I was unclear. I have Been positively diagnosed With LEMS. There’s no doubt about it. But I also have other diagnosis on top of LEMS that confound symptoms. I have positive SFEMG’s & P/Q & N type antibodies, muscle weakness & atrophy. Finding effective treatment that I’m not allergic to or that works is my challenge sadly.

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

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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/

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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.

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

 

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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 😡

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

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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 about this rare and intriguing disease.
Yes, please keep us posted if they ever get to publication.  🙂

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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 splinting from the severe weakness is my left arm and right calf.
I’m just starting to have some occasional weakness now in my left calf   But for years it was only unilateral on those 2 areas.
I truly hate it when providers try to box diagnoses into one standard box. While for many, that box is the same, but for the rare few, it’s absolutely not. Providers need to really hear out the patients and listen to us. It’s our bodies and we know it better than anyone can imagine!

when I started to lose my voice from lems they all thought it was from Reflux. Seriously people! I’ve had GERD my whole life and know very well the symptoms of reflux. That wasn’t it. It wasn’t until I saw an actual neuro-ent that they found atrophied vocal cords FROM LEMS, not GERD.

if it bothers you enough, don’t just take one persons response. Keep searching for answers is my advice.

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

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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 are trying to determine which to try first. The 2 options on the table right now are: Imuran vs. Cellcept.

My Rhuematologist just weighed in and thought the Imuran could also cross benefit a few of my other conditions he’s trying to treat like reactivate arthritis (aka Reiters Syndrome), Lyme arthritis, Sjogrens and possibly joint pains from my EDS??

So will be waiting for now to see what neuro decides as they hold a round table to discuss & decide my next steps.  My labs need to be a bit more stable anyways to start. So I will keep the group posted.

In the past I’ve tried:

steroids, Plasmapharesis, ivig, 3,4 Dap, rituxan iv, Humira, leflunomide, methotrexate, sulfasalazine & plaquenil.

I have a tendency to develop pretty serious reactions to medications/vaccines etc. due to bad MCAS (mast cell activation syndrome). Also doesn’t help my 2 primary immune deficiencies of CVID & IgA deficiency or my myeloma!

🤦🏻‍♀️ Good Grief! 🤦🏻‍♀️

 

I do think our zoom meet & greet was very helpful! Hearing others experiences with LEMS was very insightful to my own journey!!

Thanks for holding it!! 🙏🏼🙏🏼😇

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For some reason the link doesn’t open for me.
can you post the zoom mtg # / pwd if any?
if shouldn’t be made public, then can you private message it to me?
thanks so much!😇

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I will try to see if I can make it too. 😻

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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 sadly muscle relaxers. I take baclofen and tizanidine. The baclofen I only take before any planned activity and the tizanidine only during active painful spasms.

Obviously muscle relaxers is not ideal for LEMS patients, but my spasms are severely debilitating so for me very much needed.

Also, don’t be put off by the Highlands Leg Cramps. It’s a natural homeopathic supplement and not typically carried by your average conventional pharmacy. You’ll find it no problem in natural stores like Whole Foods & Sprouts. It costs usually less than $12 and not a big money maker at conventional pharmacies. So just because your pharmacy doesn’t stock it shouldn’t be a red flag. Most pharmacies may carry limited types of vitamins and a few herbals but rarely homeopathic remedies.

I wished the Hylands leg cramps worked for me. Unfortunately my case is too severe. But I’d gladly take an all natural supplement with  either no or minimal side effects any day over potentially damaging side effects from pharmaceutical medications.

I use the Hylands Nat Phos #10 for my GERD and it’s been more effective than any GERD/PPIs meds I’ve ever been prescribed.

So I would definitely be open to at least trying it?? With homeopathic remedies you will know pretty quickly if they work or not and Hylands is very affordable to try…

hope this helps. Feel better soon….

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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 treatment. But it took me almost a year to fully recover. It was pretty terrible.

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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 if 6 wks was long enough to garner benefit, but I definitely experienced severe side effects sadly.

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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 & often.
I recently switched back from liquid back to tablets due to the cost. My swallowing therapist told me to coat them in honey before swallowing & that seems to help a bit.

 

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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.