Lambert-Eaton Myasthenic Syndrome (LEMS) Confirmed!

[Gingergrrl]

Oh no. I know its a real diagnosis, but I just dont know if I actually have it lol sorry if I offended you!

You didn't offend me at all, I was just not sure if you were questioning if it was a real diagnosis or questioning if you personally had it. I couldn't tell from what you wrote. Thanks for clarifying!

 

[Gingergrrl]

If it were me, I would be wanting to have the equivalent of the Mayo PAVAL panel or DYS1 panel run even though their panel more specific for LEMS is the MGL1 panel.
https://www.mayomedicallaboratories.com/test-catalog/Overview/37427
https://www.mayomedicallaboratories.com/test-catalog/Overview/37428
https://www.mayomedicallaboratories.com/test-catalog/2011/Overview/83380

I wanted to thank you again for posting the links to these three Mayo panels @kangaSue. It was perfect timing and you saved me a lot of work and I am very grateful! I'll be talking to my doctor tomorrow (re: other issues) but am now planning to ask him which of these panels he wants me to repeat in Aug.

I'm also going to ask him if he wants me to repeat the lung cat scan in 2018 (since they really say you should have it for 5 yrs w/LEMS and the CA+ Channel Autoantibody in case it is paraneoplastic-- even though I have done three cat scans and we do not believe there is a hidden cancer in my case).

I have now read through and compared all three panels and my gut is to do the DYS1 Panel b/c it seems to include the VGCC autoantibodies and anti GAD65 (all of which he wants to re-measure for me) vs. it looks like the PAVAL Panel does not include anti GAD65 (unless I am somehow missing it)? I will see what he advises. Thank you again for posting those links! You ROCK as usual

 

[kangaSue]

@Gingergrrl The Mayo Encephalitis (ENS1) is actually another one in the same vein that would be worth doing for those where mental issues are involved in the mix too as this is one of few Mayo panels that does an NMDA receptor Ab test in the first run.
https://www.mayomedicallaboratories.com/test-catalog/Overview/48401

After having lung cancer, I was followed up for five years where they did a yearly CT lung scan for the first 2 years then just a yearly chest x-ray for the last 3 years. I imagine it would be safe now for you to just to do a chest x-ray at the most given the improvement you have had from treatment

 

[Gingergrrl]

After having lung cancer, I was followed up for five years where they did a yearly CT lung scan for the first 2 years then just a yearly chest x-ray for the last 3 years. I imagine it would be safe now for you to just to do a chest x-ray at the most given the improvement you have had from treatment

That is interesting and I have no idea what my doctor will say when I ask about this tomorrow. The guidelines for LEMS and the Calcium Channel autoantibody is 5-years of high resolution lung cat scans (done once a year) so they can catch it early if you have SCLC since it is so fast and aggressive. But it is also a LOT of radiation exposure!

I was looking at the CA+ Channel and LEMS groups I belong to tonight and one post said that 50% of cases are paraneoplastic and a hidden cancer will be found within 5 years... but I am not really sure if that is correct? Although it did scare me! In my case, I have so many other autoantibodies that my doctor had felt that my whole system was in autoimmune chaos vs. that I have a paraneoplastic syndrome. But who really knows?

I had not read or posted in the CA+ Channel or LEMS groups since before my mom got sick and passed away. When I read through only about 1-2 months of posts tonight, it was so overwhelming that I had to stop and did not post anything b/c there was so much new info, articles & videos and I wanted to read everything and meet the new members and read how the old members were doing. But at the same time, even if I read everything, I do not think it would change a single thing in my current treatment plan with IVIG & Rituximab.

Sorry, I hope this did not go too off-track @crypt0cu1t and I think you might find the LEMS group interesting if you want the info, I can give you in a PM. Many of the members there are unclear on their diagnosis and interestingly, a huge percentage of people in both the LEMS and CA+ Channel groups also have POTS (like I do). I wish I was smart enough to know what this all meant.

 

[Gingergrrl]

@kangaSue @crypt0cu1t In case this is helpful to anyone, I did my phone consult today and will be doing the Mayo DYS1 Panel (vs. the others) since that one covers everything that we want to re-check. I will also be repeating the Cell Trend Panel (now with 11 tests vs. nine when I did it back in 2016).

I will not be doing any of them until Sept so it will be at least eight weeks after my IVIG (this Th and Fri). This will be my last IVIG cycle and then it is finished . My next Rituximab (#6) will be in early Aug but that does not affect antibody test results like IVIG can. I won't get off track with other stuff from my phone consult but thought this part might be relevant or useful here.

 

[Diwi9]

I will also be repeating the Cell Trend Panel (now with 11 tests vs. nine when I did it back in 2016).

Do you know how much the Cell Trend panel costs, out-of-pocket?

 

[Gingergrrl]

Do you know how much the Cell Trend panel costs, out-of-pocket?

I actually don't know and have not looked at the Cell Trend website yet to see the current costs. I am certain it will be less than when I did it in 2016 b/c I was "patient zero" (for my doctor) and there was no test kit or lab req, etc. I went to a specialty lab (at that time) and then had to go to the bank and do a wire transfer from US Dollars to Euros which cost a huge fee.

My doctor now has a test kit which his office will mail to me and a phlebotomist who can come to my apt and do the blood draw. And I believe that you can now pay with Pay Pal and don't have to do the international wire transfer. So it should just be the cost of the actual blood tests and the Fedex International Overnight for the kit. When I do it in Sept, I can let you know!