Ashley Gregory

Good morning!

As most of you already know, I was diagnosed with LEMS about a week after my 25th birthday. 

A recent study titled “Single-Center Retrospective Analysis of Paraneoplastic Syndromes with Peripheral Nerve Damage” found that younger patients with LEMS or other paraneoplastic diseases are more likely to delay receiving medical care…[Read more]

Hey all! 

I recently read an article on Myasthenia Gravis News called “What They Don’t Tell You About Getting an Implanted Port”

Many of us with LEMS also have implanted ports (Mediports) and some of you may be considering getting one if you don’t already have one. 

I got my port implanted in Feb 2017, about a year after my diagnosis…[Read more]

Hi LEMS friends! 

Most of us that have been diagnosed with LEMS have auto-antibodies to calcium channels, either P/Q or N-type. We can also have both types of antibodies. 

Did you know there are some LEMS patients that have NO antibodies and are considered seronegative? 

“A study of 110 LEMS patients in 2002 concluded that  Anti-P/Q-type v…[Read more]

Good morning my fellow LEMons! 

Last week I had my first in-home infusion and I wanted to share my experience with you all! 

Overall, there were no dealbreakers, but there were definitely some kinks in the process, which I did expect for the first time.

The pharmacy delivered the medication and supplies to my home a few days before my i…[Read more]

Hey all!

@pricewool and I thoroughly enjoy our monthly Zoom meetings with you all!

Due to a change in my schedule, we are switching our meeting to the second Wednesday of each month!

I thought it may be easier to post dates for the meetings for the next year so you can plan ahead to attend if you want to!

We are also going to use a…[Read more]

Good morning all! 

This week is the week I’ve been waiting for- my first in-home IVIG infusion.

This is really exciting for me because I’ve been going to an infusion center for my IVIG since 2016.

I think this is going to be a good change for me as it will make my infusions more comfortable and easier. I now won’t have to make a 30-m…[Read more]

Another year has come and gone! Can you believe it?

They say time flies, and boy, they weren’t lying! It seems like time goes by faster the older you get!

Does anyone else feel that way?

What are your highlights from this year?

Do you have any plans for 2023?

Hey all! 

Flu season is upon us and a few of my coworkers have already been out with the flu! 

I get my flu shot yearly and try to get it as early as possible. This year I got it at the beginning of October. I usually don’t have any side effects from the flu vaccine, so it doesn’t bother me much, but I know some do.

Do you all get flu s…[Read more]

Good morning my fellow LEMons! 

Lori Dunham recently posted a column about how swimming has helped her daughter Grace with her LEMS.

Recently, I joined a club that is a group of women who take pictures underwater as mermaids. 

I hadn’t swum in a pool in quite some time. I was quite nervous that the extra exercise would flare my LEMS…[Read more]

Good morning all! 

I just wanted to send a quick reminder that our next zoom meeting will be next Tuesday, December 6th at 5 pm EST.

At this time, we’ve decided to keep the discussion open for whatever topics you wish to talk about.

If you have something particular you want to talk about, please let us know in the comments!

Looking fo…[Read more]

Hey all! 

Here in the US, Thanksgiving is coming up later this week! 

I thought it would be a fun idea to share some of our favorite “healthy” recipes with each other. 

I think it would be easiest to share the link (if it’s from an online source) but you can also type ingredients/recipes in comment as well! 

One of mine is: Sweet…[Read more]

Good morning LEMS friends!

Last month during my infusion a patient care advocate from my health insurance company reached out to me with some exciting news! She was checking to see if I would like to change my infusions to in-home instead of going to an infusion center.

For me, this is big! I was given this option in the past,…[Read more]