Y Petrie

Having both is the rarest.  I have both (plus several other autoimmune conditions) and it is sometimes called Myasthenic Overlap Syndrome.  I’m not the only one though!

https://pubmed.ncbi.nlm.nih.gov/26418033/

I respond to and take both Mestinon and Firdapse daily and respond to both IVIG and plasmapheresis.

Don’t ask me which —MG or LE or b…[Read more]

Here is an example of a double lumen vortex port.  Vortex Dual Port – Kimal

Plasmapheresis removes blood from one side of the port and puts it back in the other side of the port with large 16 g needles (after enough sticks can’t feel it much). They remove 60% of my blood volume each time, keep the plasma (which has all my antibodies) and then…[Read more]

P/Q negative, N positive.

3 tests over 18 months while doing IVIG (blood drawn 7-30 days after IVIG infusion) – all P/Q negative and N positive in each test result.  Not all at same lab either.  IVIG didn’t suppress my own N antibody titers enough to turn any of the three tests from positive to negative.  What did I care about? Was the test el…[Read more]

I had a mediport for over a year with no issues.  Infusion nurse recommended it due to scar tissue in the one vein that is easy to access despite the scar tissue – glad I took her advice.  It was replaced in August 2022 with a double lumen vortex port so I can do plasmapheresis (I have myasthenia gravis and lambert eaton).  The double lumen po…[Read more]

Insurance authorizations what fun…I own a hyperbaric clinic and we have to do prior authorizations for many insurance companies.   I found it helpful to “think like an insurance company”.  1 – Most insurance companies are not in the business of paying claims, they are in the business of making money. 2 – They want to save money by having you tr…[Read more]

Published literature shows that LEMS and MG can co-exist.  I would be surprised if many docs actually get this.  I think an EMG in someone who has both would be very inconclusive or may even be normal!  Sometimes I think docs rely too much on blood or other tests forgetting the SYMPTOMS and the entire clinical picture.   I had a visit with Dr.…[Read more]

Ruben Cintron MD – McLean, Virginia.  Has been my neurologist for years and diagnosed a very rare form of vertigo after a car accident in 2015 all other docs missed.   I understand he has two other LEMS patients.  Not easy to get in to see, but very caring and works long hours.  Quest Diagnostics panel showed positive for Voltage Gated Calc…[Read more]