Anyone have LEMS?
 

I was just curious if any of yall tested positive for LEMS? I have an immune issue where I don't mount antibodies to things (always negative after vaccinations etc) .. anyhow I still don't have an actual firm diagnosis, but the IVIG works AMAZINGLY.. with my mild tongue atrophy and proximal and distal limb weakness I just wonder if it could be LEMS, and if so should I do something like a PET scan to make sure there is no underlying cancers or issues like that? Just something I have wondered about throughout this process.
(Sorry about all the questions- i just have so many)!

I can't remember how you were diagnosed--was it by single-fiber EMG? If so, I believe that a SFEMG can distinguish between LEMS and MG:

http://ukpmc.ac.uk/abstract/MED/1662...GECu6XFV7D.139

But the SFEMG is such as specialized test that I don't know if every neurologist who performs it can read it that carefully.

Another characteristic of LEMS is that whereas exercise makes MG symptoms immediately worse, it tends to make LEMS symptoms immediately better. But from what I read, this is one of those "sometimes" characteristics. Not every LEMS patient has this experience.

One of the first symptoms of LEMS is often a very dry mouth.

None of these things is conclusive, but taken together they might be reassuring.

I'm so happy to read that the IVIg is working for you, by the way! When I had my first course of IVIg, I also worried that I was imagining the improvement...until it started wearing off.

Abby

They can check for anti-VGCC antibodies in a blood test. My neuro tested for LEMS at the same time as AchR and Musk. (The VGCC is voltage gate calcium channel if I remember correctly.)

Thanks Suev! They did that blood test on me but it was negative... as are most of my antibody tests (with the exception of a high ANA).. I have never mounted antibodies that they can measure- after vaccinations my titers were always negative as they were also after I knew I Had a virus (like chicken pox).. so most of those antibody tests don't really rule out that process for me.. The treatment as far as I know is IVIG.. so that part is good.. I just worry if i had some underlying cancer, which a lot of LEMS patients do, if I need a PET scan just to make sure?? humm.... Thank you! hope all is well!

Did all of the tests come back yet? Have they run your IgA, IgG, etc.? If you are below normal in these, your antibody tests may be false negatives and your doctors will have to go by clinical exams and response to treatments.

Considering how bad you got, it sounds more like MG than LEMS. But, as Abby said, LEMS isn't exactly predictable either.

If you're worried about possible cancer, there are markers the can look at to check on that. Also, small cell lung cancer is common in LEMS and they have done a Chest CT on you, right?

Antibodies can also be so busy attacking your tissues that they don't circulate in the blood all the time. Ups and downs in antibody tests is NORMAL and they may not catch you at a time when yours are available for that test. ;)

Annie

Thanks Annie!! My dr said my antibody tests aren't back yet.. and I have had just about everything else scanned, but my chest! They haven't mentioned doing that yet.. I have my follow up in a couple of weeks so i'll ask about it for sure! thanks so much for your advice!

I had my IVIG today, hoping it will work as amazingly as the last round!!! :)

Ask for EMG test or RNS test to confirm LEMS, I got diagnosed with LEMS after my doc test me for RNS and I'm positive pre synaps myasthenia (Lambert Eaton Myasthenic Syndrome)

i've been told i do
 

I received diagnoses about two years ago . DAP works well enough that I feel like excercising . Hopefully the market will improve enough that I can get partime work .

Thank yall!!! They did do a CT on me a couple of months ago - it was normal... I had forgotten about the LEMS little question in my mind until recently.. I have been getting IVIG every two weeks and doing pretty well, though at times my symptoms fluctuate quite a bit!!
I do have the dry mouth and autonomic symptoms that could go with LEMS... but the bloodwork was normal (though i recently read only 40% of people with LEMS have the antibodies- who knows if thats correct)!

Anyhow.. those of you with LEMS - did yall have muscle pain?? the past few weeks I am getting more muscle pain - mostly low back, butt, thighs.. my CK is normal (as far as myopathies etc goes).. and I just wonder why do my muscles hurt so badly at times!! Even when I sit on my bum for too long or against my back (like when I sit for IVIG) my muscles KILL - this intense ache!! I came across this associated with LEMS sometimes - I was curious what yalls experience was!? thanks!

I think I have LEMS
 

I tested positive for Calcium Channel AB (10x above normal). I have had constant bilateral leg pain since May 2011. I have POTS. I have fatigue. I have dry mouth. Havent had an EMG. Based upon my antibodies, my doctor thinks I have LEMS. I am going for IVIG treatment this week. The pain in both my feet, calves, hamstring and butt are my worst symptom. I take medications for the POTS which stabalizes my dizziness. I would like to make contact with more people who have LEMS to discuss diagnosis and treatment.