What year where you diagnosed with LEMS?

[Krzysztof]

<span lang="en" style="max-height: 999999px;">Hello, I was diagnosed around 2003. In Warsaw, at the medical university in Poland
Christopher</span>

[Mary]

I was Diagnosed December 2020. The blood test came back as low. But my symptoms put me in the hospital 3 wks. Rehab 2 weeks. Im being treating for it with IVIG along with a steroid and Pyridostigmine and i hope it works. I have tube feed because. I got down to 99lbs. What i have read on this forum might be dated but i seem to relate to each. The double vision and swallowing are most challenging. I cant get feedback on double vision. I
have prisms for reading but cant wear them all the time. Sorry i got carred away

[Krzysztof]

Hello. I was diagnosed around 2003. In Warsaw, at the medical university in Poland.

I tek 60 mg of Firdapse and 180 mg of Pyridostygmine and 35 mg Prednizon

 

[Mary Ann Camporeale]

I was diagnosed with LEMS June of 2018.

[Roberta]

I was diagnosed in 2008.

[Dorothy Dempsey]

I was diagnosed with LEMS in 2014.

[Ashley]

Hey

@krzysztoffrompoland

@marym

@maclif

@bobbi-lynn-berry

@dordem

I’m so thrilled to see all of your responses! Thank you for sharing with me! I think it’s pretty interesting that so far most of us have been diagnosed in the last 10 years! I believe that LEMS is more common than thought, but misdiagnosed very often or patients are left with an undiagnosed diagnosis. I wonder if LEMS has always been this prevalent or if something in the environment or our genetics are to be blamed for the increase. What do you guys think?

[Joanne Evans]

I was diagnosed in January 2020 but had symptoms for 8 years prior. Was forced to leave work early.

I am thinking our numbers would be much greater because the percentage of cancer and LEMS.

[Ashley]

Hey

@joanneevans

I’m sorry you had such a long time waiting for a diagnosis and that you were forced to leave work. I’m sure that was very hard.

[Ron Lisjack]

Started noticing mobility issues around Dec 2018, came back home to work and noticed that I needed to use both railings to climb stairs, so off to the Doctors I went. I was diagnosed in the fall of 2019, after 6 or 7 months of multiple Doctors, MRI’s, EMG’s, X-Rays,

[Ashley]

Hey

@ronlisjack

Thanks for sharing with us! I’m glad you didn’t have to wait terribly long for your diagnosis!

[Tina Sadler]

I was diagnosed in January 1994

[Ashley]

Hey @teenz!

Thanks for sharing with us!

[David1949]

I was diagnosed in 2014.

[Ashley]

Hey @dpmitnick

Thanks for sharing!

[Gary Chudd]

I think I was about 50 when they finally diagnosed me with LEGS after many misdiagnoses.

[Ashley]

Hey @gary-chudd

Thanks for sharing! What were you misdiagnosed with prior to your LEMS?

[Ginny Boynton]

I was diagnosed in 2001 after just a few months of noticeable weakness.