David1949

I have strange reactions to adhesives. I had a 2nd cervical fusion on December 13th. My Neurosurgeon covered the incision with a thin film dressing called tegaderm. I had a severe allergic reaction to include burning  itching and swelling. Three months later I still get a severe itch if there is any tag in my shirt rubbing against the site. The…[Read more]

<p style=”text-align: left;”>Does anyone know if being on IVIG infusions would affect the results of a “high frequency nerve stimulation” EMG?</p>
Posted by David

Thank you for the information Heather. I have communicated with my neurologist in reference to these comments and I hope it makes an impression on him.

Don’t have one. I am a very hard stick because after 8 + years of IVIG there is alit of scar tissue in the veins in my hand. They are now using the ultrasound to locate a vein in my forearm and I leave it in for two days.

Thank you Ashley. These two articles are very helpful for my Advocacy. I’ll keep everyone posted on what happens.

I am type N.

Ashley,

In reference to this comment, “I have not been re-tested since then as I was told IVIG skews levels and can cause a false negative”, do you know if there is documentation on the fact that being on IVIG could give a false negative?
<p style=”text-align: left;”>My neurologist has tested me twice recently and and both test were…[Read more]

Dorothy,

For my constipation, I take generic colace 3 times a day and I am as regular as can be. (I purchase the Member’s Mark stool softener at Sam’s Club or Amazon. It is a good value.)

David

Thanks price.

We will be going to UNC Medical Center at the end of January for an appointment at the swallow center there. We will be headed to the University of Virginia Medical Center in the near future for a specialized EMG.

These two will be the first time we stayed away from home since summer, 2019.

Covid permitting, we will be VACATIONING…[Read more]

Debbie,

I have been living with LEMS since 2014 when I was 1st diagnosed. You have received great answers to your list of questions. I just wanted to add my encouragement and support to you. Price recently told me to trust my neurologist. I am and I will. I will keep you in my thoughts and prayers.

David

I am most proud that my wife, Doris, and I celebrated our 50th anniversary on April 1st. Talk about time flying. Although our celebration was limited by the pandemic, we did the best we could.

In 2023, we will be venturing out, as Covid’s presence allows. We have travel reservations in May. Pray we can get away from the home we love.

Merry Christmas all. My LEMS gift list is small (I don’t need or want much). I wish for a doctor that tells me what is it that I have since my current Dr. says I don’t have LEMS and is tapering me off of IVIG therapy. I have an appointment January 3rd and I hope my wish is granted. In three months I have more than halfed my dosage. Please keep…[Read more]

I got my high dose Flu vaccine in mid October and my 6th covid vaccine administration in early November.  Fortunately,  I don’t get horrible side effects from either vaccine.

As long as someone offers me a Flu or Covid vaccine or booster, I will step up and be happy to get mine

LEMS voice would be one of the earliest symptoms I can remember of my LEMS diagnosis. Before I knew anything about LEMS, I knew that some of my vocal patterns were not normal.  Now the answer to what was wrong with my voice is connected my diagnosis. It is usually an early sign of a flair up. My diaphragm is the first muscle to show the effects…[Read more]

My wife, Doris, is my caretaker. She utilizes many of the skills and knowledge  she gathered as a Hospital Clinical Social Worker.

I put my meds together once a week for the entire week. I take my meds with breakfast, before dinner and before bed. This has been my routine for years.

My father had another neurological disorder – Charcott Marie Tooth disorder. It was disabling to the point he was confined to a wheelchair. We were estranged so I don’t have much detail of his illness.

Ashley,

I participated in the trials of firdapse but had to quit because when I had IVIG with the trial meds I retained huge amounts of fluid and ended in the ER. Is Firdspse different than the dap3 that was used in trials in 2017 in this area?

David

Ashley,

This is great news. I’m glad the switch was a good one. I may make the same move after my late September appointment.

David