What age were you diagnosed with LEMS?

[MG Community Member]

I was 71, first symptom was shortness of breath .

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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.

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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.

[MG Community Member]

Hi

I just joined the forum today I found your post. Similar to you my legs would just go. I was 39 so 25 years ago now. My first diagnosis was depression ! Was a long slog but I take DAP 7x daily. It is my lifeline

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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

[MG Community Member]

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.

[MG Community Member]

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?

[MG Community Member]

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?

[MG Community Member]

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!

[MG Community Member]

“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.

[MG Community Member]

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

[MG Community Member]

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.

[MG Community Member]

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!

[MG Community Member]

<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.

[MG Community Member]

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.

[MG Community Member]

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!

[MG Community Member]

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.

[MG Community Member]

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.

[MG Community Member]

Hey all! We’ve had a lot of new members join since this was posted! We want to know what age you were diagnosed with LEMS or what age your family member was when they were diagnosed!

[MG Community Member]

63 years old. Diagnosed September 2023

[MG Community Member]

And no, they didn’t take me seriously. I visited 22 medical specialists, referred by myself (the only one I didn’t see was the gynecologist, for obvious reasons). After more than two years without a diagnosis, they finally found it, and it wasn’t a doctor; it was an EMG technician.

[MG Community Member]

Rene, I’m so sorry you went through this! I’m so glad you finally got answers. Thank goodness for that EMG technician!

[MG Community Member]

Thanks, Ashley. Check out the private message I sent you regarding my Nutritionist’s lecture.

[MG Community Member]

I was diagnosed in Feb 2020 when I was 73. I started having symptoms around April 2019. It took 10 months and 9 doctors to get a diagnosis, which I have since discovered is much quicker than many others. Every test I had, including blood work, stress tests, pulmonary, heart monitoring, etc. were normal. But I knew it wasn’t normal that I was unable to walk. The problem is that so few doctors have any knowledge about autoimmune diseases other that MS or ALS. I finally found a neuromuscular specialist who was familiar with PoTs. He took it as a challenge to figure out what was wrong with me. Thank goodness!

[MG Community Member]

Anngail, Thank goodness that doctor was willing to think outside the box and get you diagnosed! I know many of us have waited longer than 9 months for a diagnosis, but to me, that is still far too long to wait! I hope we can all keep educating everyone about LEMS to keep decreasing the time it takes to diagnose us!

[MG Community Member]

I was diagnosed at age 74, however had had symptoms beginning when I was in my late 60’s.

[MG Community Member]

Thanks for sharing with us Dorothy!