What Are Your Symptoms of Pmc?

I also have PMC.  It is from my mothers side of the family.  I live in Canada and because there was a lot of people in my family (or so I have been told) who had it in a close area some doctors got excited and we have been subjected to a lot of studies and test.

Apparently my family has a very unique strain which after reading some posts I'm not the only one so I question really what that means.  We have been told that we have a potassium problem in our Nerves channels where (as doctors have explained it) our nerves are like gates that open and close to allow different ions to pass through them (sodium, potassium, calcium and chloride ions).  And in my family's case the "gates" for the potassium channels either get stuck open or closed that will either stop all potassium ions or there is no stop to them which then cause the different PMC symptoms.

I have found there seem to be some differences in the symptoms among diagnosed people and I'm curious to know other peoples symptoms.  For me smaller muscles are really only effected such as my facial muscles, neck, hands, fingers, toes and so on.  When I get into cold conditions these muscles will "cramp" up like if I smile I might not be able to release that smile or shut my eyes tight or make a fist.  In normal conditions I can reproduce the symptoms to a much lesser degree and it really only affects me if I close my eyes really tight or close my fist really tight for longer period of time.  If I am exposed to prolonged cold conditions I will loose my fine motor skills in my fingers to the point that its difficult to pick up a pencil or zip up my coat.  With even longer exposure to the cold larger muscle are weaken like my arms and legs but I  am still able to appear normal and for the most part function normal. Those case are also rare since I don’t subject to myself to that length of exposure.  With any of the symptoms I am able to "mask" them enough that at least people don't seem to notice.  For me it’s just learning to use different muscles to zip up a zipper or pick up a pencil.

My uncle has experienced complete paralyses on more than one occasion after surgery.  The first time lasted for about 3 days and it was determined the anesthesia they gave him for the surgery combined with PMC caused the paralyses.  Doctors seem to be really confused on what to do with surgery and with my experiences they have always made sure the O.R. is really warm and put freshly warmed blankets over me as they wheel me into the O.R.  I find it kind of funny like they don't really know what to do.  I am told we can’t have non-depolarizing muscle relaxants.

DamianWarS DamianWarS
7 Responses Jan 22, 2009

I AM ALSO A cANADIAN AND WILL BE 90 YRS OLD IN mAY I have had PMC all my life it was passed on to me from my Mother and she had it passed on to her from her Father. They were both born in London England and beyond that I do not know. I had 7 siblings and half of it had PMC.I have 2 children and only 1 has PMC and he has 2 grandchildren whoalso have PMC also both his children have PMC. Dr. Hudson has done a lot of research with a grant from the Jerry Lewis foundation but nothing has changed so we keep hoping.

Hello, I am Monica 40 years old and have recently been diagnosed with Paramyotonia Congenita. I have 4 other family members who have it. I have found weather does effect me. I look like I work out daily and have enlarged muscles but in fact never work out or excersise. I have pain,stiffness and weakness everyday of life, When I walk I waddle. Some times my legs lock up and my hands cramp often. The worst part for me is just cleaning my house exhaust me and makes me very weak. I go to the MDA in Houston,Tx and the Doctors said my problem is sodium in my nerve channels. They have me on Mexatil 150 mg. (sodium blocker) twice daily after one week of taking it I saw a huge difference for the better. I want to exercise to be healthy but truly I am to weak. I do good if I can put my 2 year old in a stroller and take a walk. I went through a lot of testing including genetic testing. The Doctors told me that Mexatil is one of the newest and seems to work great for my condition.

Hi my name is Laura, I am 28 years old and I live in England. I have had PMC since birth which was passed down from my mother, subsequently my two daughters have the same condition. <br />
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I have been diagnosed with paramytonia congenital paralysis, but from reading other people's symptoms mine slightly differ. I also suffer from the muscle tightening in face, hands toes etc when subdued to the cold but I also suffer from full body paralysis which can last hours upto days. <br />
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On a daily basis my arms/legs can weaken and lock up on me, sometimes I can feel it coming on and others I can't. Lots of factors can bring on a attack such as hunger/skipping meals, eating large meals before bedtime, sitting for long periods, exercise and certain foods. After the attacks my muscles will be sore, tight and weak the best desc<x>ription of the after effects is like you have taken part in a marathon which you have done no training for. I also have very large and defined muscles in legs/arms back etc and I am also freakishly strong. My daughters also have the large muscles and strong strength. My daughters ages are 6years and 1year, they also suffer with the cold and paralysis.<br />
Has anybody else got the enlarged muscles?

Hello! <br />
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My brother and I both have PMC, passed down by our biological father. Our symptoms are similar, but the cold isn't a factor for us as much anymore (we moved to the south in our teens). <br />
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I have had two episodes of total body paralysis (with the exception of my mouth, neck and eyes) upon waking in the morning. One of those episodes lasted less than an hour and the second took almost two days. I was hospitalized during the second one (I couldn't lie on the bathroom floor forever, LOL) but they just took blood and did some strength tests. <br />
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I've never been on ANY medication for this, as my doctors never offered me any! I didn't even know you COULD be treated. The doctors always had the attitude of "Wow, that's interesting... " but they never had any answers to offer me.<br />
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Most recently, I only have episodes of weakness (loss of tone) in one hand or arm, or my knees will lock when I get out of the car. The locking is only a few seconds but the weakness can last several days and I have to be careful not to overstress that part of me trying to "make it" work. That just leads to soreness for several days afterward. <br />
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I've found that some of this "freezing" is triggered by strong emotions or stress. Has anyone else had this issue? <br />
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Atlanta, GA

My symptoms of PMC are not like the ones you describe. Or at least they are on a different level. I have never randomly had an "attack". I sleep wearing very little and always with the blankets half off my body and with a fan pointed at my body all the time. I also have been known to sleep with the window open in the dead of winter and I have never had a PMC problem related to these. Since it is so rare I know there could be different levels of it and I just assumed my level was the norm but I could be wrong.<br />
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My family, including me, have been documented with having paramyotonia congenita. I am told that “myotonia congenital”, “myotonia”, and “paramyotonia” are all different conditions and are not the same as paramyotonia congenita (which apparently is the rarest). Some of the stories I have read on this forum makes me question if some people really have PMC because their symptoms differ so much and maybe they have another condition that is closely related but that isn’t to say that you guys don’t have it.<br />
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Through the research that has been conducted on my family (and still being conducted) my mother has been taking different medications sort of as a test subject. She currently is taking 50mg of Flecainide Acetate once a day and tells me that she has experiences no bad side-effects and it seems to correct the PMC symptoms. She has done her own testing by sitting out in the cold or putting her hands in ice water for a long period and there is no cramping/weakening of the muscles that she would normally get.<br />
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Flecainide Acetate is an antiarrhythmic used to treat abnormal fast rhythms of the heart. It apparently works by regulating the flow of sodium in the heart (according to Wikipedia) which I suspect is the reason why it works for PMC since it is a problem with the sodium and potassium channels. It is a generic drug and a month supply is like 30 bucks. Perhaps it is a treatment that you might want to try. But of course I am not a doctor and you should talk to one to see if it is right for you.

Hi names Scot I've grown up with PMC and the two types of paryodic paralysis that comes with it. PMC is a nurological distraphy it happens when we have an impablance or electrolytes. I have all the symptoms you have but it affects my mobility alot more aka hamstrings, claves, bicepts, pectorals, sometimes the glutes than my small muscles that control and on occations will have a salty tast in my mouth. O rember some days that i've woken up after 3 hours of sleep with a sever paramyotonia attack and wouldn't be able to get up let alone sit up. I aways roll of my bed then crawl on the floor to a chair in my room to help me get up. Then i basically walk like a penguan (wadel) to the places i need to go. usually after these you will wake up sore and the longest i've had an attack occur is 2 days stright with trying everything i normally do to get the muscles relaxed.

It sounds as though you and I have very similar experiences when it comes to cramping up. I slept under a fan last summer and woke in the middle of the night with all my exposed muscles in complete seizure and or cramp. It was so painful I couldn't even move, it took me twenty minutes before I could get into my shower to see if hot water would help them settle down (which it did thank god.) The only methode I have found o find relaxation was to have a few drinks, (which I now don't do at all,) any of the "Pam family," Lorazapam, clonazapam and so on and so forth. These seem to really help me settle down. One of my biggest problems is after a day of work.... I just sit there and can't relax.... So, anything to add? Or have Ihelped in any way?<br />
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Steven, (Halifax.)