Heather

I have a port – I’m a tough stick and my veins are shot after years of infusions. I get 5 days of ivig every 18 days. I have never had any issues with it, though I have a fabulous infusion team!

if anyone has questions, I am happy to video what it looks like to access the port when I go in next week. I’m also happy to answer questions.

heather

I have a very rare primary immune regulatory disorder in addition to LEMS. Going through all the immunological testing taught me more than I wanted to know about the impact of IVIG on antibodies.  Bottom line is that any tests done with ivig in a person’s system will be  inaccurate-you have to be off ivig for 3 months to get an accurate test. I w…[Read more]

Heavens yes… I will write more later today when I’m able but to be honest the discrimination I’ve experienced this last year has been shocking. I am so grateful that you brought up this topic!

My daughter is 14 and showing signs of LEMS. I can’t find any pediatric neurologists who take it seriously tho because she comes up negative on the fractionated antibody tests. I did too – until they finally caught the vgcc antibody once.  Thank goodness for a persistent neurologist!

That’s today at 2 pacific? If so I would love to join, tho I can only stay on for a few minutes

I’m back to the same question as I am having another flare of LEMS after having it fairly controlled for the last two years.  I also have an immune deficiency so I need to keep that in mind.

when I have done ivig for LEMS my dose is much higher than for immune deficiency.  I assume that’s the case for others too.  This time my neurologist is cons…[Read more]