Roll call!

[Lori Dunham]

Our daughter Grace, age 16, was diagnosed two years ago. We live in Jacksonville Florida.

[Ann]

I live in Owen Sound, Ontario, Canada and was diagnosed December 2017.

[Joanne Evans]

Hi everyone. My name is Joanne Evans and I’m from Duncan, Vancouver Island, British Columbia, Canada. I was diagnosed January 2020. I have been dealing with symptoms for 8 years prior to that.

[Price Wooldridge]

I’m in Fort Worth, Texas! Diagnosed in 2017.

[Ashley]

@lorildunham @mackenzie @joanneevans @pricewool

Thanks for sharing with us! We are glad to have you all!

 

[David1949]

I live in Suffolk, Virginia and was diagnosed with LEMS in 2014.

[Tina Sadler]

Hi all.
I’m not sure if I’ve already done this. Sorry if I have.
I’m Tina. I live in Tremadog, North Wales. In the U.K.  originally from England.
my 1st symptoms (droopy eyelids, the LEMs waddle) began when I was 13 years old.  I was eventually diagnosed in 1995 when I was 24 years old.
its nice to meet everyone.

[Price Wooldridge]

@teenz Tina, thanks for posting more information on you and your LEMS story. I’ve always called it the “LEMS walk”, but I think I like waddle better!
We have a Zoom social every month on the forums and haven’t had anyone from Europe attend yet. It’s at 10 PM there, so not too late. If you can join us @ashleygregory757 and I would love to meet you. If I recall she was diagnosed at 26 so similar to you.
The date is Tuesday November 9, 10 PM your time. There will be an entry link that day on the forums page.

[Ashley]

Hey @dpmitnick

I am in Virginia Beach!

[Roberta]

I live in northwest Iowa.  I was diagnosed in 2008.

[Kevin Deihl]

Hi Everyone! I’m Kevin Deihl, living in Chandler, Arizona and I was diagnosed in January 2019.

[Ashley]

Hey @specialk70

Thanks for sharing with us!

[Ashley]

Hey @bobbi-lynn-berry

Thanks for sharing with us! I’m sure you have lots of tidbits of LEMS wisdom 🙂

[Todd Fringer]

Greetings to everyone. My name is Todd. Career Army retired in 2006 from severe injuries which resulted in Quadriplegia.  I live in the Upper Mid West, Wisconsin. Symptoms first appeared in July 2010. I was diagnosed in November 2011 by the VA via blood test and symptoms. Medication worked great for 8 weeks then became less affective more often. So VA Neurology decided to administer the EMG. Which of course showed I didn’t fall into the LEMS range- how could I, my nerves are extremely compromised. They said the EMG would still work as if I had not injuries. **** *** ****?

Fast forward to July 2021. While an inpatient at the same VA for PT/OT  rehabilitation, I went from walking 160 feet in Friday ro not being able to stand up on Monday. A older Neuro Dr simply asked me what I thought was going on. I said I believe I have LEMS- and he actually listened. Sent blood test to Mayo that day. Two weeks later results came back positive.

Thank God for the FDA approval of 3,4 DAP in 2018. For me its been very effective. However, 3 weeks ago I had pneumonia.. Since then my symptoms have returned as if I wasn’t taking 3,4 DAP. Super frustrating when my one good arm can’t even touch my face.

Oh, I’m cancer and tumors free. There’s always a Silver Lining.

Hope to connect with everyone whom wants to expand knowledge, share stories, give advice and mutual support.

[Ashley]

Hey @cowboytodd

First, thank you for your service! @pricewool is a veteran as well!

I’m glad you were able to advocate for yourself and push for a diagnosis! That’s awesome!

I’m also glad to hear that 3,4 DAP is working well for you! Sometimes it takes us a little longer to recover from infections like pneumonia, so don’t lose hope! You might also look into IVIG therapy, many of us with LEMS rely on monthly infusions of it to keep maximum function.

Keep us updated! and Thanks for sharing with us!

[Graham Head]

Hello My name is Graham Head I’m into fourth year of my L E M S diagnosis.I life in Northern England facing to the North Sea in Hartlepool. I’m an outpatient at Neuro at James Cook Hospital Middlesbrough. At the moment feel totally marginalised from the medical fraternity. Last week in the the UK a Genome Project was able to map the whole gene sequence for rare disease to help in early onset diagnosis. I’m on the rare diseases register but was totally unaware of this research. When I approached the research centre today they are over their limit in numbers. So four years of missed opportunity. Today I’ve been totally knocked sideways by my COVID booster but nobody seems to want acknowledge so unable to get any follow up. Nothing like life on the rare diseased margin!

[Price Wooldridge]

@ghead Hi Graham! Thanks for checking in. Life with LEMS can be frustrating when medical professionals don’t understand. I assume you’re in the National Health Service, the ins and outs of how best to take advantage of it, are beyond my knowledge. COVID vaccine reactions to the booster are varied. I only had one day of a sore shoulder with the Moderna. Others have gotten ill. The good news I’ve heard these reactions are generally gone within a couple of days. I hope yours resolves quickly! Let us know.