[Roberta]

Yes.  From the very beginning that was noted.  I have a little reflex in the arms but pretty much none in the lower extremities.
My neurologist said that was one clue that made him think I had LENS.

[Roberta]

I certainly have issues with being in direct sunlight and the heat. The weakness becomes pronounced and my legs feel like wet noodles!!  After almost passing out twice I discovered I was not sweating which caused the overheating. Fortunately I recover quickly after getting in the shade or cooler temperatures.

[Roberta]

I will sure try to log in!!!

[Roberta]

I was fortunate to see a doctor who studied under Dr. Lambert at Mayo Clinic.  So within 6 months I had my diagnosis.  I started Mestinon right away.  After bad reactions to immunosuppressant drugs I started IVIG a year after my first symptoms appeared.
.4 g /kg every 4-6 weeks.  First treatment 3 days in a row.  I now go 5/6 weeks between my infusions.  I have had both Gammagard and Gamunex-C and noticed no difference. between the two.  I am very thankful this is working so well for me.

[Roberta]

Sorry I won’t be able to join you.  Hopefully next time!!

[Roberta]

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

[Roberta]

I take two 60 mg pyridostigmine 3 times a day ( after each meal).   I have been on this dose for over 10 years.   As long as I  take them after  eating, I have few problems.

[Roberta]

I received my booster last week.  I had a headache off and on the next day.  Maybe a little sleepy, as well, but otherwise no problems.

[Roberta]

Wow.  That seems like a lot!!!

For twelve years I have been on 0.4g/kg.  The first dose was four days in a row. Then every 4-6 weeks.
I am about 55 kg so I get 20 grams every 4-6 weeks.  I am now going 5-6 weeks between IVIG’s and doing well.
Bobbi

[Roberta]

I was diagnosed in 2008.

[Roberta]

Thanks.  I will double check, but that is what I was thinking!!

[Roberta]

How long between having IVIG and the vaccine???  Best to get the vaccine in the middle of the IVIG cycle???

[Roberta]

Ha. Don’t know what I was thinking!!!  I was 53. Not 63!!!  Been 12 years since my diagnosis.

[Roberta]

I was 63

[Roberta]

Dairy is one of the first things I eliminated after being diagnosed. I definitely felt  better.  Helped with lessening the tingly throbbing in my legs!!!  Since then many more things have gone from my diet related to IBS; whole wheat, nuts and peanut butter to name a few!!!

 

[Roberta]

The onset of my LEMS was fast. From my first appointment with my family doctor to getting diagnosed by the neuromuscular specialist was six months.

[Roberta]

I was diagnosed by a neuromuscular specialist at the University of Wisconsin/Madison. He had trained under Dr Lambert at the Mayo Clinic which certainly helped with my quick diagnosis.  It is a 6 hour drive for me now since I have moved to Iowa from Illinois, but I continue to receive treatment from a neuromuscular specialist there. I go one or twice a year.

[Roberta]

I have never experienced pain with my LEMS.

[Roberta]

I was 53.

[Roberta]

Very interesting posts!!!  I am just very thankful that I have little to no side effects from my IVIG. Only a headache occasionally after the infusion which I get every 5 to six weeks.

[Roberta]

Hello!!

I go for my infusion every 6 weeks now.  I was diagnosed 11 years ago at University of Wisconsin/Madison hospital. I was blessed to be seen by a doctor who had studied under Dr. Lambert at the Mayo Clinic.  He had a very good idea from the beginning that I had LEMS.  So it was only 6 months before I started treatment after no cancer was found.  I had a bad reaction to Imuran and Methotrexate, so I started on the IVIG right away.  I also take Mestinon.  I began with infusions every 4 weeks, but have been able to stretch it out now to 6 weeks.  I always take a book to read to help pass the time.