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How many here have Lems?

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Unread 02-09-2013, 11:00 PM   #1
limpy
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Default How many here have Lems?

I have just been diagnosed with Lems and wondering if there were other members here with it.
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Unread 02-11-2013, 09:27 PM   #2
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Hello, and welcome!! I believe there may be one person on here with LEMS... I have suspected LEMS with myself, however my antibodies are negative. ..

Do you mind sharing your story about your symptoms and your treatment? I get IVIG and it works for whatever I have, however I have wondered if DAP would help me .. IF that's what I have .. hopefully someone else on here can help you!
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Unread 02-11-2013, 09:28 PM   #3
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Quote:
Originally Posted by limpy View Post
I have just been diagnosed with Lems and wondering if there were other members here with it.
The jury's still out in my case.
There does seem to be a pretty active Facebook LEMS group. Just be careful, it's an Open Group so no privacy.
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Unread 02-12-2013, 07:49 AM   #4
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You might also find a more active LEMS forum at http://www.mga-charity.org/forum/index?device=xhtml
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Unread 02-12-2013, 08:16 PM   #5
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Originally Posted by bny806 View Post
Hello, and welcome!! I believe there may be one person on here with LEMS... I have suspected LEMS with myself, however my antibodies are negative. ..

Do you mind sharing your story about your symptoms and your treatment? I get IVIG and it works for whatever I have, however I have wondered if DAP would help me .. IF that's what I have .. hopefully someone else on here can help you!
Over the past several months my symptoms include fatigue and weakness, pain hind eyes, especially when focusing on near objects such as text messages, extreme neck pain and weakness, difficulty swallowing, especially when chewing, first one eyelid drooped mostly when I was tired at the end of a long day, then both eyelids drooped, then they either both drooped or took turns. Deep wrinkles appeared in my forehead from struggling to keep my eyes open. When really tired, my mouth turns down in a frown and my lower lip gapes open, very weak legs, especially upper leg muscles, everything is heavy to try to pick up and I have difficulty opening things or holding things. Difficulty breathing at times and especially when standing still and upright. Low blood pressure that goes extremely low at times, sporadic heart palpitations and fast beats.
All these things started slowly and became worse over time. At first it was just the weakness and droopy eyes and weird heart and breathing things.
In June the LEMS test was negative.
Only in the past couple of months has the swallowing started to get scary.

In January I got five Ivig treatments and sixty mg prednisone and I got much worse. I was not able to swallow at all and had a feeding tube placed. I was tested again for LEMS while in the hospital and this time it came back highly positive.
I was put back in for plasmapheresis for five days along with twenty mg prednisone. Because i do have lems the plasmapheresis was dicey at times. it was discovered that calcium must be running during the entire treatment or my muscles clampmdown including those needed for breathing. The eye symptoms are mostly gone, the neck pain is gone and I am much stronger, although not normal.
I will not go into the bad treatment I received at Emory University in the interim of these two hospital stays. That is an entirely different story.
All in all I am much improved and looking into trying 3,4 dap to see if it will give me more strength.
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Unread 02-12-2013, 09:26 PM   #6
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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?
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Unread 02-12-2013, 09:44 PM   #7
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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!
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Unread 02-12-2013, 09:53 PM   #8
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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!
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Unread 02-12-2013, 10:03 PM   #9
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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)
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Unread 02-12-2013, 10:04 PM   #10
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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.
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