Y Petrie replied to the topic Who’s Rarer? Myasthenia Gravis or LEMS? in the forum General Questions and Topics 1 week, 5 days ago
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!
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]
Y Petrie replied to the topic Life with a Mediport in the forum IVIg and Plasmapheresis 3 months, 2 weeks ago
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]
Y Petrie replied to the topic Seronegative LEMS in the forum Diagnosed- What now? 3 months, 3 weeks ago
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]
Y Petrie replied to the topic Life with a Mediport in the forum IVIg and Plasmapheresis 3 months, 3 weeks ago
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]
Y Petrie replied to the topic IVIG Getting Approval, Easy or Hard? in the forum IVIg and Plasmapheresis 1 year, 2 months ago
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]
Y Petrie replied to the topic Diagnosed with Myasthenia Gravis Jan 2021, Thymectomy Feb 2021 and LEMS Dec 2021 in the forum Introductions 1 year, 2 months ago
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]
Y Petrie replied to the topic Finding a new neurologist in the forum Diagnosed- What now? 1 year, 2 months ago
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]
Y Petrie started the topic Diagnosed with Myasthenia Gravis Jan 2021, Thymectomy Feb 2021 and LEMS Dec 2021 in the forum Introductions 1 year, 2 months ago
I live in Northern Virginia, am a chiropractic physician no longer working due to multiple autoimmune and other conditions, and my family owns a hyperbaric clinic in Vienna, VA. I diagnosed my own LEMS through bloodwork, after a year of having classic Myasthenia Gravis symptoms before and after thymectomy for thymus hyperplasia. There is a thought…[Read more]
Y Petrie became a registered member 1 year, 3 months ago
Welcome to the Lambert-Eaton News forums @drpetrie !
My co-moderator @pricewool and I are so happy you have joined our community!
We have members from all over the world with LEMS and have a ton of information to offer! I would love to hear more about your experience with LEMS! I am also in Virginia! What part do you live near? I’m in…[Read more]