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.

Natops- wow, you sound so much like me!!! I have had a pain in the butt - literally since this all started!!!! that is probably my weakest area, shoulders and well everything else, including face is a close second! :) I do have ptosis and at times swallowing difficulty too.. I Have dry eyes, dry mouth (it actually bleeds at times from things like brushing my teeth - ew!), but at the same time it isn't that dry, just my tongue is wierd I feel like.. metallic taste as well.. basically every single muscle is affected.. I was tested for POTS... they said technically I was negative as my BP didnt drop enough - however my heart rate sky rocketed to 150's when tilted and with forceful breaths .... all they could say was- "Strange" gee thanks! :) My pupils are also affected - sluggish and dilated more than norm, especially after concentrating on something up close for a bit.. I do almost pass out everytime I stand up..fun!
My emg's (many of them) are negative, but I have been getting IVIG for a year now (every 2 weeks).. it was absolutely AMAZING!!! the 1st treatment,, i thought was just placebo effect in my mind, thought I could do things I hadn't been able to do for months- I just wrote it off.. the 2nd IVIG was a miracle.. I was basicaly back to normal! Now my IVIG tends to wear off around day 10, and sometimes I make it to the full 2 week mark... I got my hands, swallowing and breathing, and well everything back to normal, and now it just fluctuates depending how bad I am pushing myself...
Good luck with the IVIG!!!! Let me know if you have any questions about it!

My neuro has diagnosed me with seronegative MG and thinks maybe I also have LEMS because I have autonomic dysfunction. I am wondering too, I mean, if you are getting hit from both sides of the neuromuscular junction, could that be what is causing my situation to be so extremely difficult? There are major swings in functioning, despite IVIg every 2 weeks.

I also have dry mouth and eyes but it might be Sjogrens?? So complicated!

artchick- my rheumy initially thought I had neurologic sjogrens... not sure if she still does or not (follow up in a week). my autoimmune markers are always up.. I also have days, which are more rare now thank goodness and usually after pushing myself too far or being sick with a cold/cough etc where I can barely put one foot in front of each other, breathe, or snarl a smile.. and then other days where I am satisfactory or pretty darn good! I was freaked out about 2 months ago about my swallowing and nasal voice - they were awful, I couldn't hardly take pills, eating and drinking were all hard, now swallowing is back to normal- after a round of IVIG... it is all so strange, that is for sure!!! Looking in the mirror is always strange for me when my IVIG wears off, as I just look frowny, tired and just not the same as 2 years ago, with my saggy face!

My first IVIG gave me just a few days of improvement 30%. Now I am back to my old achy self. Am wondering if IVIG is the right thing for me.

natops- glad you felt some effect from it, but sorry it didn't last long!
Was this your first round of IVIG?
I had my initial loading dose in the hospital and only had mild improvement.. I was defintely better, but it was mild enough that I wondered if it was just placebo effect.. it wasn't until the 2nd round that on the 3rd day or so afterwards I woke up a changed person - like my old self! it lasted about 10 days until I felt it all start taking over me again..
The neuros said a lot of people take a few rounds before noticing a difference .. have they talked about DAP as well ? I hear the combo of IVIG and DAP is what really works for LEMS..
Do you have facial symptoms? ptosis and swallowing/speech issues at all?
Good luck!!!

Ok, I googled it. DAP.
Dog Appeasing Pheromone
Draw a Person Test
Download Accelerator Plus
I don't think I found the right one. What is DAP?

haha, yea those probably wouldn't help us out too much! :)


here is the full name 3,4-Diaminopyridine (3,4-DAP) I don't know a ton about it.. i'm sure if you goggled lambert eaton and DAP more info is out there..From what I gather it is like mestion is for MG, but for LEMS (from what little I know, mestion isn't usually much of a help with LEMS).. so most people do IVIG +DAP or just DAP.. I believe steroids sometimes as well.. I want to give it a try and see what happens, but I haven't researched it enough to know the possible side effects

Just saw this when I was looking for stuff concerning Lems. I tested positive for Lems in January, but tested negative several months earlier.
Mestinon is helpful for my Lems, but I am probably going to be starting Dap soon.
If you have any questions about Lems in my experience, I would be more than happy to answer them.

Thanks so much Limpy!! I sent you a private message a week or so ago with more questions haha - sorry I have so many!!! Did you get that? I just had IVIG so it kicked in and I'm feeling so much better.. though I get freaked out from my breathing before it kicks in.. and sometimes it feels like my pinky fingers just don't work quite right! Ever have this?

I don't think I got your message, but probably didn't know it was there. I will go look. Ivig did not benefit me that I could tell. High dose prednisone really made me bad. Plasmapheresis has been the most beneficial so far. When my hands are weak, it is not just the pinky fingers. I cannot grasp anything.

Thanks so much!!! Yea my entire hands/well body, gets limp spaghetti noodle on me when my IVIG starts wearing out.. but my pinkys just seem like they have trigger finger for some reason.. my others dont' feel that way.. maybe it is only trigger finger, and that's it.. it's hard to separate whats symptoms of this thing I have going on, verses whats a part of it all!?! when is your appointment? I hope they get your DAP and it works well!

Yes, I have LEMS & I need answers to my questions. This is rare & too many isn't sure how to treat it. I am so in pain & depress from it!

There is a closed group on Facebook for people with Lems. You can get a lot of answers there.

ask your neurologist about DAP (diaminopyridine) if your neurologist isn't familiar with this medicine perhaps you can get a referal to a different doctor.i've been taking DAP for over three years and the difference is great.good luck!

Myasthenia Gravis and age questions
 

I have been diagnosis with MG Jan 2014 standard treatment Mestinon, IVIG 3 times so far. Called my doc three weeks ago told him I was crashing he would not do anything so I hunted another doc lucky enough to fine one went to him Friday May 30 2014 crashed Sunday June 1st 2014 could not get up. Went to hospital stayed 5 days took ivig started prednisone 60 MG a day. I have talked to him about a maintenance program (the old doc) or remove my thymus but he says no to all. I am 68 years old he said it too late in life, maybe I don't know but thinking of doing it anyway. Need help advise any similar experience out there. New doc put me on 80 MG a day prednisone today is my 9th day of prednisone and is my weakest period I have read.
Question any older men like me with thymus remove?
Any experience with a program called Sub Q?

Eddie, I am curious to what medications they put you on and what type of autonomic symptoms you have. I have been diagnosed with MG (double sero negative, positive SFEMG) but have another autoimmune disease unidentified. I have a lot of autonomic symptoms, chronic diarrhea and profuse sweating and extreme intolerance to even room temperature. I like it very cold. these symptoms are reduced with prednisone. I am headed down to John Hopkins in 6 weeks. I hope they can fix this other autoimmune issue now that my MG is stable.


thanks
kathie