wow Limpy!! You sound very similar to myself... I have had pain behind my eyes (with movement) since this all started.. droopy eyelids, proximal weakness... well all over weakness, but buttocks/hips have gotten pretty bad at times.. breathing, swallowing, smiling - tachycardia, GI issues etc.. They said my autonomic system is affected with whatever I have..

Very interesting about the LEMS antibodies.. Do you have any muscle atrophy?? I feel like I do just all over a little bit.. I know that can happen with LEMS.. but I doin't know how common it is...

I have heard wonderful things about DAP.. I have wondered if anyone is ever put on it without positive antibodies.. also for people who are seronegative for LEMS (from what I research that is about 40% of people without cancer)... how are they diagnosed?? I had a repetitive stim, but it was 2 weeks after IVIG, so they don't think it was accurate.. but it did go from weak to stronger to weak again.. just not a big enough difference to say it was abnormal...

Does your chest wall feel weak ever?

I also meant to ask - did you get buttock pain?? I get deep buttock muscle pain at times.. it can also hurt to sit for a while as well.. Funny you said that about the standing still and difficulty breathing - when I sit in the car in the same position for too long my chest starts hurting and feeling weak. ... its awful!

Bny806,
You sound like you may have LEMS , too. The main thing that makes it difficult for me to breathe when standing is that my chest wall and diaphragm feel heavy. It almost feels as ifmi am collapsing in on myself, if that makes sense. This is promptly relieved if I sit in a reclining position or lay down. Sitting in an upright chair is difficult, but not as bad as standing still. Walking is easier, because I think the muscle use is shifted around instead of calling on the same muscles over and over in standing.
Yes, I do have muscle wasting, especially in my left thumb and wrist, but now mostly to some degree all over. The thumb and wrist atrophy is what brought me to my current neurologist for a second opinion because my orthopedist wanted to do four surgeries on my arm and hand to try to correct this.

And yes, I do get deep muscle pain and cramps. When I was on plasmapheresis and the calcium drip ran out, I had buns and abs of steel, couldn't talk and could not move my diaphragm to breathe. I get really weird spasms in my jaws that hurt and the rest of my face gets contorted when I am really weak. Sometimes at my worst if I look in a mirror, I do not recognize myself!
And, yes sitting in a car, especially upright, is very uncomfortable. I have a squishy travel pillow, the kind with the tiny foam beads to help hold up my head and I have to recline the seat if I can.
And,yes pain with just eye movement, too. Although eye pain is very minimal and only occasional since plasmapheresis. Also, with the eye pain, extremely blurred vision. This is better too after plasmapheresis.
Hope you can get diagnosed soon and on your way to feeling better, because this is no way to live.

Hi Limpy, When you say the muscles that are needed for breathing "clamp down", what does that look like? Is it like a spasm? How would you describe it? This may be unrelated, but for 3-4 years, I've had a muscle spasms/tightness in leg that wouldn’t release or relax no matter what I did. Ist a LEMS symptom?

Can anyone tell me if there's any symptomatic difference between MG & LEMS (other than the muscles become temporarily stronger with repeated stimulation)?

bny806, 40% of people with LEMS who don't have cancer test negative for the VGCC antibody?!! Where did you get that information? I'd like to read more about it, please! (I got stronger on repeat stimulation & tested neg for VGCC & feel my MG/LEMS is autoimmune-related. Does muscle atrophy not happen with MG (mine have wasted & bones are beginning to pop excessively)

I get pain in my arm & thigh and droopy eye on the side I'm sleeping on. The pain in my thigh can cause me to limp for a couple days. Is that more symptomatic of LEMS or is that also a MG symptom?

Thank you!

I can't remember where I read that it was 60% of people without cancer test positive, so 40% were seronegative.. here is a little more info (though the range is huge) http://emedicine.medscape.com/articl...up#aw2aab6b5b2

I thought I had seen someone on the facebook page for LEMS say that as well (I'm not a member of it, but I do peak in and see what people say)

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.

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.

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.