How many here have Lems?

seishin · 02-12-2013, 10:42 PM

Is the 'vibrating muscles' sensation unique to LEMS? Since all these symptoms started happening, I'd assumed all the bodily changes were MG so I don't know how to distinguish between MG symptoms and LEMS symptoms. Do you guys get undue muscle pain when the muscle is pressed on? That just started for me. Is that LEMS or could it just be a symptom of muscle wasting?

When it was at its worst, I felt a tightening (the sensation of a clay mask drying on the skin) roaming across my face distorting my eye, forehead, locking my jaw, causing a strangling sensation across my neck.... The tightening was actually flickering on & off, ebbing & rising and would allow me to talk then making it hard to move again. Is that a LEMS symptom? Or MG? or both?

For two weeks, my throat has been spasming (I assume it's a spasm) that alters my voice to soprano range when I talk. My voice returns to normal range if I have food in my cheek, tilt my head forward or backward, if I drink, eat, cough, burp or sneeze. Then I'm reverted to soprano again within 1-5 seconds. Is that a LEMS symptom? Or MG? or both?

limpy · 02-12-2013, 10:44 PM

Quote:

Originally Posted by keepingfaith

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 have had vague weaknesses for a long time but just figured it was old age or deconditioning, but the thing that got my attention was April of last year, when my heart starting jumping around in my chest and pounding and racing, and I felt really weak and my chest felt heavy and had to concentrate on pulling in each breath. My chest wall felt really weak. i had no chest pain. When I got up to walk, I had to hang onto something and was afraid to let go. I had to go to the ER and was worked up for heart and diagnosed with an arythmia, but didn't think anything of it until I started having more symptoms with the eyes drooping more and more and the facial tightness and progressive body weakness.

bny806 · 02-12-2013, 10:45 PM

again, HUGE relief hearing your symptoms, especially since you are a confirmed LEMs case..
At times (not always), I will angle my foot inwards and it will stick that way for a few seconds.. it doesnt' hurt, it's not cramping.. but it's just not relaxing..

As far as looking in the mirror.. I agree! I see pictures of myself and I can hardly recognize myself!! The weeks before I was admitted into the hospital last year (when they started my IVIG).. There was a picture and video of me with my kids.... I saw it recently and couldn't get over my face.. it was as it had melted off my bones.. I was only 30 at the time.. not supposed to look like that just yet!

bny806 · 02-12-2013, 10:50 PM

Limpy - my first trip to the ER (and thankfully only trip- the admit happened through my dr's office).. was due to fast heart rate with palpitations and well I felt weak, but just thought it was a result of the heart.. I was post partum, so figured it was just post partum hyperthyroid or something (i had my thyroid checked a billion times - always normal)..

Anyhow.. I had some crazy palpitations.. but what got me to go into the ER was my resting heart rate was in the 140's... it was awful.. this stayed that way for weeks on and off, mostly on! My resting heart rate is almost always 100 or more since onset of this.. It used to be in the 60's before onset of symptoms..

seshin- yes my muscles are tender to the touch.. when my kids climb on me it's quite painful.. especially my thighs and calves.. It has got to be a part of all of this.. though I'm dont' know what all of this is!

limpy · 02-12-2013, 10:55 PM

Quote:

Originally Posted by bny806

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!!!!

Yep, the lip buzzing is definitely a sign for me of not enough calcium getting where it needs to go. The doctor that was overseeing the plasmapheresis thought that because my calcium levels were high, I don't need calcium. I could have all the calcium in the world, it just can't get where it needs to go.

If you ever get plasmapheresis, make sure you get at least two grams of calcium to run over the entire exchange or you will be in trouble. I am so glad that my experience has helped someone. And one more tip, if you are seronegative, DO NOT go to Emory University in Atlanta!
My first LEMS test was when I was not really very bad, just beginning to have symptoms. This last one was when I was at my worst.

bny806 · 02-12-2013, 10:59 PM

You have truly helped me!!! I wish that I had a neuro that I felt more comfortable with... I will mention it again.. the fact that they are mentioning seronegative MG (after a year of being with them).. at least they are starting to think outside the box a little.. and again.. at least they gave me IVIG in the first place.. I thought I was going to drop dead at any moment before I was hospitalized.. it was awful.. I'll never forget the day I could hold a crayon with my daughter and color with her again! I am doing well, but sure would like to have a diagnosis so I can plan my future a little better and maybe get medicine that could help me more..

Again. ... THANK YOU!

seishin · 02-12-2013, 11:02 PM

Limpy, if I send you my complete list of symptoms, would you be willing to take a look at it and tell me if any of the symptoms seem to be unique or more common to LEMS vs MG? The doctor said I got stronger on the muscle fatigability test, and I respond to both Mestinon and Tensilon but I tested negative on all antibody tests and even the SFEMG so he wants to wean me off Mestinon....

limpy · 02-12-2013, 11:04 PM

Quote:

Originally Posted by bny806

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!

I am waiting for my tongue to bleed one day. I drink throughout the day, but at night I wake up with my tongue stuck to the roof of my mouth and I have to literally peel them apart. I am amazed that there is skin still left there they are stuck just like I put glue in my mouth. I only have one eye that feels dry sometimes. But it only happens once in awhile. My left eye, I will go to move it and it feels like my eyelid is stuck to it and I will have to look in the mirror because it feels like it has torn something. It feels like it should be bleeding. I went to an eye doctor the first time it happened and he said it was fine.

limpy · 02-12-2013, 11:13 PM

Quote:

Originally Posted by bny806

again, HUGE relief hearing your symptoms, especially since you are a confirmed LEMs case..
At times (not always), I will angle my foot inwards and it will stick that way for a few seconds.. it doesnt' hurt, it's not cramping.. but it's just not relaxing..

As far as looking in the mirror.. I agree! I see pictures of myself and I can hardly recognize myself!! The weeks before I was admitted into the hospital last year (when they started my IVIG).. There was a picture and video of me with my kids.... I saw it recently and couldn't get over my face.. it was as it had melted off my bones.. I was only 30 at the time.. not supposed to look like that just yet!

Exactly, the muscle stiffness is just that they are frozen in place. Not like a true spasm with a lot of pain. Well , except for when trying to swallow against it and it feels like you are trying to swallow a basketball. And when my buns were stiff, I think the pain from that is because I couldn't move to shift my weight so they became painful.
I can change my appearance throughout the day depending on how weak I am at any given time.

limpy · 02-12-2013, 11:17 PM

Quote:

Originally Posted by seishin

Limpy, if I send you my complete list of symptoms, would you be willing to take a look at it and tell me if any of the symptoms seem to be unique or more common to LEMS vs MG? The doctor said I got stronger on the muscle fatigability test, and I respond to both Mestinon and Tensilon but I tested negative on all antibody tests and even the SFEMG so he wants to wean me off Mestinon....

Sure, I would be more than happy to try to help. Mestinon helps me, but does nothing for the eyes or the swallowing. The only thing that has helped that is the plasmapheresis.

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