What age were you diagnosed with LEMS?

[Tom sharpe]

I was 71, first symptom was shortness of breath .

[Kevin Schaefer]

Thanks for sharing! Did you find any resources that helped you early on?

[Alan Stone]

I was 70 when first started losing athletic coordination, LEMS was diagnosed age 77.

[Kevin Schaefer]

Thanks for sharing! Did you find any support or resources early on?

[Alan Stone]

No support. Spent month of Sept.,2016 in local hospital trying to get a diagnosis. Was discharged with a diagnosis, toxic encephalopathy. University of Miami Health finally made LEMS diagnosis in June, 2018 after acting as my own advocate.

[Dorothy Dempsey]

I was diagnosed with LEMS in 2014 when I was 74. Had symptoms starting in 2009.

[Rene]

I was diagnosed with LEMS in 2023 but I was sick with LEMS since March 2021

[Kevin Schaefer]

Thanks for sharing! Did you find any support or resources early on?

[Kevin Schaefer]

Thanks for sharing! Did you find any support or resources early on?

[Dorothy Dempsey]

Further to last reply, my first symptoms were lack of coordination, trouble staying on my feet with frequent hard falls just like my legs were suddenly taken out from under me. My initial diagnoses was spinal stenosis for which I was given exercises to do, all of which caused much fatigue.

[bill]

i was 77 years old I was diagn.in five months with small cell carcinoma..

[Kevin Schaefer]

Thanks for sharing! Did you find any support or resources early on?

[lauren]

I was diagnosed when I was 5. I definitely think it had a role in getting diagnosed.

[Kevin Schaefer]

Thanks for sharing! Did you find any support or resources early on?

[Ginny Boynton]

I was 43 when diagnosed in 2001. My proximal leg muscles were noticeably weaker which is why I sought out diagnosis. I was still playing many sports at the time including basketball and soccer. I was fortunate in how quickly I was diagnosed because the facility I sought out for diagnosis was one of those on the Jacobus IND, and I received 3,4 DAP (Ruzurgi) quickly and was doing quite well within a year and a half or two after I got the medicine straightened out. Unfortunately with the switch to Firdapse I have deteriorated significantly and had 7 seizures in the past 2 years. I wish everyone had the opportunity to try both medicines – Firdapse and Ruzurgi. I took trips to central Europe, South America, China, Japan and Australia with only using my hiking sticks. Now I’m back to using a rollator just to get around the bathroom.

[Ashley]

Hi @Ginny.Boynton Thank you for sharing! I’m so glad you got a diagnosis early on! I’m so sorry the last few years have been a struggle for you with the change in medication. I hope someday we will all have access to both to see which works best for us.

We’re you able to find resources aside from Jacobus when you were diagnosed?

[Ginny Boynton]

Thank you Ashley. I’m not sure why I would have needed to find resources other than 3,4 DAP (Jacobus) when I was diagnosed. Between 3,4 DAP, Mestinon Timespan, Mestinon, prednisone and cyclosporine I was in good condition after we got the medicine squared away and started taking it every 2 1/2 hours. It’s only been after the switch to Firdapse and unable to access Ruzurgi that my health has changed for the worse.

Why would I have needed to find other resources?

[Ashley]

Hi @Ginny.Boynton

You may have wanted to find other resources for learning more about LEMS or for finding support from other LEMS patients (such as this forum!) . There are many copay assistance programs for LEMS patients for example!

[Ginny Boynton]

“You may have wanted to find other resources for learning more about LEMS
or for finding support from other LEMS patients (such as this forum!) .
There are many copay assistance programs for LEMS patients for example!”

Thank you Ashley. I have all the resources I need and am on a Facebook page which has been extremely helpful. I do have copay assistance as well.

[Ashley]

Awesome! Glad to hear you have plenty of resources! 🙂

[Ginny Boynton]

I’m doing pt and have improved my balance, but without being able to access Ruzurgi, I’m never going to be in as good a physical condition as I was since I first got my medicine straightened out after I was diagnosed in 2001.

[Ashley]

I’m sorry! Unfortunately we are all unable to access Ruzurgi.

Many of us receive monthly IVIG infusions or other therapies. Have you considered trying IVIG, Rituxan, or cell-cept? IVIG has been a lifesaver for me!

[Ginny Boynton]

<div>I take medicine every 2 1/2 hours. 80 mg. of Firdapse. 150 mg of Mestinon. 180 mg Mestinon Timespan. five 1 mg. prednisone. 1 25 mg cyclosporine and 2000 mg of mycophenolate mofetil. The mycophenolate and prednisone have been added since I had to switch to Firdapse.
</div>

It’s horrible that I, and others, did much better on Ruzurgi and it’s no longer available. Before I switched I hadn’t used my rollator for decades…unless it was to sit on while I took photos of sporting events. Now I’m having to use it to get around the bathroom. Catalyst doesn’t listen to us when we say we need it and has never solicited our comments about how we’re doing on it.

[Jamie L Sanderson]

Hello Everyone,

I was diagnosed with LEMS at age 58. I began running out of energy and couldn’t stand for long periods. I worked at my favorite job, Starbucks. It was disappointing when I had to quit working due to weakness and stamina.

I’m grateful I found a neurologist who had another patient with LEMS. That’s when my journey began.

[Ashley]

Hey @Jamie L Sanderson ! Thank you for sharing with us! I’m so sorry you’re unable to work! I wish more places were accessible to those with disabilities like us. Maybe one day we will get there!

[Tina Sadler]

I was 13 in 1982 when symptoms started. Couldn’t find what was wrong with me. I was too young for LEMs. According to my records.. which I have seen. I saw a new neuro in 1993, when I was 24. By this time I was in a wheelchair. Could only walk a few steps without falling.

The Neuro diagnosed me after my 1st visit. Tests confirmed.

So yes. Age does make a difference. Or at least it did 43 years ago.

[Ashley]

Hey @Tina Sadler ! Thanks for sharing with us. I agree age makes a difference in diagnosis. Many people have the misconception that younger patients shouldn’t be “sick” and often we struggle getting taken seriously. I’m so sorry you had such a gap in the start of your symptoms and your actual diagnosis! I was also diagnosed in my 20s, but luckily my diagnosis only took about a year. I hope now that awareness for LEMS is increasing, less patients will have to wait long for a diagnosis.