[Jenny C]

I was just diagnosed a few weeks ago.

I have an unusual route. I had severe double vision onset in February this year. I wear contacts and have terrible vision so I assumed it was my contacts needing to be updated. Because of Covid I could not get into the Opthamologist until June.  He could not figure out the cause. Ran every test in the book and eventually ran the Lems antibody test. Which came up positive.
I have had severe fatigue and weakness for past year but my doctors told me it was menopause. Lol

My opthamologist sent me to a Neuromuscular specialist in Dallas at UT Southwestern (5 1/2 hour round trip for me).

Her name is Dr. Trivadi. She did tell me she’s only had a handful of Lems patients.

They have since sent me for CT scans and MRI twice since I have small nodes on my lung (they say one is “spiculated” so they will watch and repeat in 3 months.). I also had 2 lesions on my liver and they are watching those also.

So I am at very beginning stages of Lems. Look forward to ruling out cancer hopefully. But glad to have a diagnosis besides “menopause”.

[Jenny C]

Thank you Price! That helps ease my mind a lot that it isn’t definitely cancer. I was worried that since I have the antibodies it was probably a sure thing. Glad to hear not necessarily! Thanks! I’ll let you know.

[Jenny C]

Well I got my credit scan back but I have not talked to my doctor yet. Then scan showed 2 small nodes on my lungs and 2 nodes on my liver.
I’m pretty surprised because I have never smoked.
I’d like to think it’s not cancer. But I know the odds.
Anyone ever have a similar CT but not have cancer?

[Jenny C]

I’m also in Texas. 111 degrees today. Ugh. It’s just unbearable for me and I used to stay out in it for hours on our ranch. But now when I get hot it is very difficult and long before I can cool off. I’m like Ashley— I just feel faint and when I go inside I just want to lay down. Even in very cold AC, it can take me an hour before I cool off. It’s miserable.

[Jenny C]

Thanks for the cutting and pasting tip!  Saw that afterwards!

[Jenny C]

On my second dose the last 3 days in mestinon I’ve had trouble speaking- like forming certain words. I don’t see that as a side effect anywhere online so I don’t know if it is the meds. Has anyone heard of this?

[Jenny C]

I don’t have cat acts but I have very bad double vision.

[Jenny C]

My first and second antibody test came back the same with p/q type antibodies of               .7  nm/L.

I have a CT scan scheduled. Dr I have been referred to is 3 hours away in Dallas. I will have EMG nerve conduction test that day too.

I don’t think they will let me come in on a cancellation since they have different things scheduled. And they did start me on mestinon. Not sure how to tell if that is working or how soon it should — I’ve been taking it a week.

[Jenny C]

Hi Price! I’m from Albany— small town about an hour northwest of Abilene Texas.

Ashley-  I have not had any tests yet. They have set me up for the EMG and nerve conduction test on September 28th and a CT scan that day too. They did start me on Mestinon.

it hasn’t helped any yet but I’ve only been on it a week— not sure how fast it is supposed to help. I’m on 60mg 3x/day.

My GP said it might Myasthenia Gravis but I did not test positive for any other antibodies so I wasn’t sure about that. Don’t think he knows anything about Lems which is why he set me up an Appt with Dallas Specialist.

so I’m just waiting. They said no hurry on CT since I’m a nonsmoker.