here is some good info as well http://www.lems.com/what_is_lems


I meant to say - i have struggled with dry eyes, but also a dry mouth since this started.. my tongue bleeds and I do have a metallic taste too (even when I can't visualize any blood).. gross I know.. my whole body has gone wonky!

Limpy - I can't tell you how relieved I am to read your post!!! To hear that someone with LEMS has muscle wasting just makes me so happy I want to cry!! I have said for a while I feel like LEMS would be a fit.. they say maybe seronegative MG.. but then I feel like I have these other symptoms that just dont' fit with that..

I have read that many LEMS patients have small fiber neuropathy too- do you have any of those symptoms?? My biopsies came back very abnormal - showing non length dependent small fiber neuropathy....

It's really strange you say that about sitting up right... I feel like I can't get my chest to move, and like I have someone sitting on it when I am sitting ..but when I lean back on the couch or walk around I too am much better..

I also feel like I have atrophy all over - very symmetric.. my thumbs freak me out the most though!! I used to have good abs and was so in shape - a runner too.. the other day I looked down and asked where my bum went!?!

My jaw has ached in the past... and at times gets so weak I can't shut my mouth! it also feels like many of my muscles just vibrate when over exerted.. do you have this??

So, what is the process with getting DAP? Is it tightly controlled, and if so why is that? I feel like people more freely use mestinon, but not DAP.. curious why that is

Limpy - did you have EMGs?? were they normal?? Mine have been normal - my needle emg and Ncv (I had one small area of demylenation on my knee at first)... I have had four or five.

This is the way I understand it, but I am not a medical professional by any means
With LEMS the antibodies block the calcium channels so the problem is that I can use a muscle like to bite down on something but then the opposing muscle will not work because it runs out of available calcium, so then I can't open my mouth to even spit out the food that I can no longer swallow. My tongue freezes in place when I try to move food around in my mouth. If this happens at the same time that I have already swallowed something, it stops in my throat at that point, and I have to try to relax as the muscles spasm and hurt and try to get the food down. It is very frightening. While this is going on my heart is racing, I am not sure if it from the anxiety or the disease, because it does this when I am not trying to swallow or chew, too.
When my breathing muscles clamp down, I have to concentrate on breathing, and my chest wall just barely moves. After the episode passes the muscles release and I can inhale deeply again.

Limpy - so you have episodes where your weakness and symptoms are worse?? I can have episodes where it is really hard to do anything.. - I feel like mid morning is the worst many times.. and then I feel better..

Do you ever get myotonia like symptoms? When they hit my thumb with their reflex hammer I have myotonia - sometimes more than others.. The neuros dont' think much about it, but it freaked me out!

When they wanted to do the surgery on my arms nd hand, my neck had been killing me for a while and since I had cervical disc disease, I figured the atrophy was from something in my neck, especially since my right hand was beginning to get weaker and was starting down that same path. I decided to further investigate the neck theory and that is how I met my neurologist who is awesome.
I can't speak to small fiber neuropathy as I have never been checked for that, but I do have a sunburnt feeling in the backs of the calves of my legs that drives me crazy, especially in the evening. That, too has improved with plasmapheresis.
I have the vibrating muscles, especially in my face when I am stressed or overly weak.
The reason why dap is not readily available in the US is that it is not FDA approved, but I understand that it can be obtained for compassionate use in the case of LEMS. My neuro is checking on that now.

My EMG s have been normal. The last one I had was at Emory, and the last part on my left shoulder was somewhat abnormal, but it was done under the influence of mestinon, so I think Iftar was a very painful waste of time.

Hi...I'm very interested in your situation as well. Can I ask you what your first noticeable symptoms were? and also how long it took for this to progress to your weakest point?

I didn't know what that meant until I looked it up, but yes, when I flexed my neck a certain way while I was waiting to get admitted to the hospital, it stuck in place for a minute or two then relaxed. I have not had a reaction to the hammer, but usually just things that I am doing and muscles will freeze up momentarily.

Limpy - I Just can't get over the similarities!!

Crazy, that you mention the sunburnt feeling - I have that exact feeling - on my palms of my hands and forearms.. a little bit on one thigh as well.. The sun or heat greatly exacerbates it... I kept telling my neuro (who honestly I am not very impressed with, but they did start IVIG on me, so I feel a little obligated to stay there, as I worry another neuro could take it away - as I dont have a firm diagnosis). I kept telling my neuro that I felt like I needed to crawl out of my own skin.. but honestly I think it was more the vibrating muscle/weakness sensation than the small fiber neuropathy, that is why they tested me..

I also notice that the more I use my hands the more that numb/sunburn sensation occurs.. very strange.

All my muscles vibrate when I am weak.. including my face.. My lips will just vibrate.. Like when I was a kid and hummed against a ballon.. it's so odd feeling..

I just don't know how they diagnose people when they are seronegative (repeititve stim I suppose, but then you have to stop IVIG to get an accurate test.. and by 2 weeks post ivig I get more like a limp noodle, can't swallow etc... so I don't think I can do that)

you have given me so much hope! Thank you!!!!