What age were you diagnosed with LEMS?

[MG Community Member]

Diagnosed @ age 40

[MG Community Member]

I was 53.

[MG Community Member]

RDT I think that’s fairly early. I hope you got a quick diagnosis.

[MG Community Member]

Roberta, I believe 53 is recognized as a typical early age range for LEMS. Because it took about 9 years before my diagnosis, I’m not sure for me. My first autoimmune disorder, DH, started in my late 50’s.

[MG Community Member]

@pricewool

not so bad for me compared to others. I started off with severe dysautonomia symptoms & bad POTs that eventually led to muscle weakness & muscle cramping and eventually LEMS diagnosis.

For me It took about 1-1.5 yrs before being diagnosed. But again I traveled to many different states and saw many doctors to finally get answers when I wasn’t getting them locally in my hometown. I think that was key for me. Someone on this group I think said they were diagnosed after 8 yrs. that’s so crazy. But happy at least all here received a diagnosis.

[MG Community Member]

Yes, I mentioned it took 8 years. But we weren’t actively seeking a diagnosis that whole time. I quickly developed the inability to walk and spent 6 days in the hospital where we did all manor of tests. I got no diagnosis, but rehabbed out of it and went along several years until I started having significant weakness again. We did numerous EMGs, and finally I got sent to the right neurologist, specializing in neuromuscular disorders. Bingo. I got my diagnosis.

[MG Community Member]

@rdt

Thanks for your responses! I was diagnosed at 26, seems like I may be an outlier for the most part. @RDT, I’m glad your diagnosis was “fairly quick” like mine. I hope we can make changes so that others don’t have to wait so long, like Price and many others!

@bobbi-lynn-berry

[MG Community Member]

@pricewool

wow, what a journey…a true testament to how strong you are and quite the survivor….so glad you’re getting some relief after all these years!!

[MG Community Member]

Mi hijo comenzó con los síntomas a los 13 años. nos llevo casi dos años diagnosticarlo. Actualmente cuenta con 20 años.

Google translate: My son started symptoms at 13 years old. It took us almost two years to diagnose it. He is currently 20 years old.

[MG Community Member]

@rafaelflores

Wow! I didn’t realize he began having symptoms that young! I’m sure this has been a very hard process for him. I’m glad he got a diagnosis although sad that it took several years, which seems to be the same among us all.

¡Wow! ¡No me di cuenta de que empezó a tener síntomas tan jóvenes! Estoy seguro de que este ha sido un proceso muy difícil para él. Me alegro de que haya tenido un diagnóstico aunque triste que haya tomado varios años, lo que parece ser el mismo entre todos nosotros.

[MG Community Member]

I was diagnosed in January 2020 by a neurologist who specializes in neuromuscular symptoms. I had been dealing with issues for 8 years.

I am now 62.

[MG Community Member]

Joanne! So glad you got that diagnosis! 8 to 9 years for me too. About age 68 for me. I remember being so excited.

[MG Community Member]

Hi everyone! This is a great thread. I’m limiting my screen time with my TBI recovery but wanted to chime in for those who don’t already know…I was diagnosed at the age of 46, 4 years ago this October. Unfortunately, it has been determined I went undiagnosed for most of my life. People thing LEMS is really tough, and it can be; but LEMme Tell Ya, that the fight for a diagnosis is the worst.

[MG Community Member]

@joanneevans

I’m so sorry you also had to wait so long for a diagnosis! I hope we can begin to educate and change this for patients in the future!

[MG Community Member]

I am 53 yrs old and it took 3 yrs to be diagnosed with LEMS. It has been a learning curve for me but I still think there is something else wrong in addition to the LEMS. I am on meds now that has taken away the heavy feeling and given me some mobility back but I am still quite limited in what I can do. Steps are the worst and the longer I stand or walk the worse I get. Does everyone else feel this way? curious

 

[MG Community Member]

Michelle, glad you got that diagnosis. I’ll just comment about the steps thing. If my LEMS is pretty good I can take a flight of steps with no problem. If my LEMS is bad, I’m literally clinging to the rails and pulling myself up the steps. It changes that much. My only other thought, if your continuing to have significant difficulties on your present treatment plan, I hope you will let your Neuro team know. There are lots of treatment options out there. No miracle cures.

[MG Community Member]

Thank you. I know that people look at me crazy when I say there are good days and bad days. I am coping. I just had a follow up apt with neurologist and he basically said to give the meds time and he did not offer any other options. He did ask if I had anything in mind. I guess that made me think that he isnt too informed on what could be tried? I guess I have to keep looking and researching on my own.

[MG Community Member]

Hi @michm7270!

Sadly, most neurologists are not too well versed with LEMS. Do you know if your neuro has treated a patient with LEMS before?

As Price mentioned, there are quite a few different treatment options for LEMS. What medications are you currently taking? Have you tried IVIG yet?

Most of us with rare diseases have learned more about our diseases than our doctors. Although it shouldn’t be this way, you have to be your best advocate. You can always bring print outs of articles to your doctor to share so he/she can also learn more about LEMS. I highly recommend doing this, especially if they haven’t treated someone with LEMS before.

[MG Community Member]

1. I had symptoms at 13. Was diagnosed when when I was 24. LEMs was mentioned in my records at the start, but doctors didn’t test me for it, as they thought I was too young. That was in 1982. I was diagnosed in 1994. I suppose it was rarer back then.

[MG Community Member]

I was 64 when I received my diagnosis. I had a stroke in late 2013. My neurologist was concerned that I was having issues with leg weakness afterwards. Testing started in March, 2014 and was diagnosed in August, 2014.  Lucky to have an Autonomic Nervous System Lab nearby.

[MG Community Member]

Hey @teenz

Thanks for sharing with us! I’m sorry you had to wait so long for a diagnosis. What were your first symptoms?

 

Hey @dpmitnick

I’m glad your diagnosis didn’t take too long! We are the lucky ones who didn’t have to wait years! I hope one day everyone’s diagnosis can be like ours

[MG Community Member]

Hi. My 1st symptoms were droopy eyelids. Then walking slow. I couldn’t keep up with the kids at school.