Discussions By Condition: Muscle conditions

I have it

Posted In: Muscle conditions 14 Replies
  • Posted By: Anonymous
  • May 16, 2006
  • 04:09 PM

Hi, I have this. I was diagnosed 2 years ago after being hospitalized. i've been having episodes for more than 10 years and they have gotten worse over the years in that my muscles dont work well after an episode. lets chat.

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  • Hey there,It stinks right. One thing I read since being diagnosed is that high fat, high carbohydrate meals or alcohol consumption may presage attacks. Of course, it's all a lot of "maybes" with this.My story is recent:I was plagued with digestive problems attributed to gastritis and a general fatigue believed to be depression for well over a year. Chronic back pain due to Spondlyosis was also a daily burden. After a while, I came to accept this as my lot in life since I knew a lot of people far worse off than me On the morning of April 26, 2006 I awoke from a nap to find that I was totally paralyzed except for the ability to use my right hand and uselessly wiggle a few fingers on my left hand. I had felt "funny" in the preceding few days but didn't know what to make of it.The fire department had to take out a window in my house and remove me in a basket in order to transport me to the hospital. I then spent the next 6 days diapered and in frustrating agony as bit by bit movement very fortunately returned to my entire body.The doctors were stymied at first and asked me many questions (I could speak) and finally concluded that I had an extremely rare condition with the unsettling name of Hypokalemic Periodic Paralysis. It affects fewer than 1 in 100,000 people and I had to join rarediseases.org to research it! The neurologists at the hospital had never actually treated a case of HPP, only read of it.Since it is congenital in nature, it is believed that I have always had the potential of this happening. However it was dormant until gallstones that I was unaware of prevented several minerals to process to my pancreas, most notably potassium. This threw my entire body chemistry out of whack.Fortunately, it is believed that removing my gall bladder will prevent future occurrences of this nightmare. They wanted me to stay in until the operation but I talked my way into a "furlough" from the hospital until May 9 when the doctors will remove the gall bladder.Update: 05/26/06After an uncomfortable but expected recovery from surgery two weeks ago, I suffered another blow to my health when I awoke on May 21th. to find my left arm virtually paralyzed! I was shocked, disconcerted and dismayed to say the least.Went to the ER and explained my history, having to spell the name of my rare condition to the attending physician. A stroke was suspected, but fortunately a brain scan ruled that out. The tentative diagnosis was "Radial Nerve Palsy", at least a more common ailment than my previous "adventure". I have a neurological workup scheduled for June 6th to attempt to confirm what happened. Fortunately, I've had enough tests so far to rule out anything very serious.It seems almost an impossible coincidence that I should suffer 2 bouts of paralysis within a month with different causes, but I suppose it's could happen. Perhaps the numerous IVs, injected dyes and multiple daily blood draws damaged a nerve. That's the only sense I can make of this, though a doctor said just today that would be unlikely.At first, I couldn't type properly at all, my left hand just lay limply on the home row. Now I can type slowly but in short bouts otherwise an irksome "pins and needles" sensation sets in on my left arm. Other day to day tasks are similarly arduous at the moment. However, I am seeing improvement.Once I catch up on lost business, I'll work at developing a domain that I bought - hypokalemic.org - That may be a few months down the road.Good luck to you and keep reporting. I felt all alone with this ***n thing!Dynamic
    Anonymous 42789 Replies Flag this Response
  • Hi, I have this. I was diagnosed 2 years ago after being hospitalized. i've been having episodes for more than 10 years and they have gotten worse over the years in that my muscles dont work well after an episode. lets chat.I haven't been diagnosed with this but my potassium level is 2.1 and i have been experiencing severe musle aches recently. Was your potassium level low and what other symptoms did you have?
    Anonymous 42789 Replies Flag this Response
  • I was recently diagnosed with it, but I've never experienced an issue with paralysis. The problem I was having, albiet not common, was seizures. I had three in the span of a year an decided to get it checked out. I'm still confused those because some of what I read says this "condition" is actually an underlying cause of some other (in some cases serious) condition. My family doctor has no idea- other then to put me on a Potassium pill - not sure where to go to make sure this is not a condition that is manifesting itself as the result of another problem.....
    Anonymous 42789 Replies Flag this Response
  • I'm still confused those because some of what I read says this "condition" is actually an underlying cause of some other (in some cases serious) condition. That scares me too. Next doctor visit I'm going to get a clarification on that. In my case, as I probably mentioned above, gallstones were preventing nutrients and minerals of any sort from making it to the pancreas where a decision is made by the body as to what to do with them.I'm hoping that was my "serious underlying condition". It could be something like that in your case too which makes it treatable.If your doc has no idea except to put you on potassium tablets, I'd try another doc. What specialty? I'm not sure - gastro-entrological perhaps might be a start.I'm on the tablets too (Klor-kon 20meq 2x daily) and I've been a consistent 4. I also adjusted my diet to no more junk. Now I can't stand the taste or texture of junky food so I'm not complaining.When I woke up paralyzed from the neck down, my potassium was under 1 and my muscle enzymes were extremely low. "Sub human levels", the doctors called it. I just ordered my chart from the hospital. If there is any elucidating info in there I'll post it for everyone's benefit. The doctors hadn't seen HPP before so when I was brought into the ER and admitted, they didn't know what to make of me at first. I saw they had Internet printouts in hand that they were discussing.When I have time, I'll get my forum up at hypokalemic.org and do a little SEO on it so it gets more exposure.Right now, although the potassium level is 4, I'm currently paralyzed in my left middle finger upper joint - makes typing hard. Before that it was my pinky on the same hand.The neurorlogist theorizes that I have some subtle injury to a nerve in the ulna bone in that arm that is causing this "lighter" paralysis. My left eye also tears but several docs have refused to make a connection there.I suspect and remember I did not attend medical school due to a technicality - lack of a high school diploma :) that this disorder is named the way cancer is (which thank g-d has NO relation to this). I ONLY use cancer as an analogy because that is not a single disease with obvious symptoms but is used to describe many, many forms of disease with various manifestations and ultimate prognoses. I think we all got hit with HPP for different reasons which make it harder for doctors to pinpoint precise cause, treatment and prognosis.I feel for the poster who notes gradual muscle weakness. The only consolation I can offer is that like MS, the later in life the onset, the lesser "time" there is for the most serious of muscle weakness.Of course one must especially feel for the most common victims, children for whom a lifetime of periodic paralysis is liklier to lead to a more profound muscle loss.Adult onset is rare from the little we've all seem to have read.The poster with the under 3 potassium count should aggressively seek treatment and not settle for a confused doctor who can only come up with a supplement. BTW, I read OTC supplements are useless in battling reduced potassium. The Rx supplements may sustain a healthy potassium level but won't be enough to rescue one from an acute episode of HPP.Good luck to us all and remember, things could be a lot worse!Dynamic1
    Anonymous 42789 Replies
    • August 25, 2006
    • 01:41 AM
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  • According to all the reading and research I have done. It seems likely that Hypokalemic Periodic Paralysis is the problem that I am having. I want to describe this and see if anyone else can tell me if this sounds similar to what they have.The "episode" generally happens during the night and begins as a muscle weakness in the arms and legs. My eyes, particularly the left, is also affected during the severe attacks. My breathing becomes shallow as if I am breathing through a staw and my heartbeat is rapid. Though I dont ever remember being paralyzed, the weakness is extremely severe. I also notice a climax in these episodes where it feels like a spark plug fires in my head and sends it throughout my body. This generally happens a couple times before the attack subsides. Some of the other symptoms are difficulty swallowing and strange sensation in my head. Does any of this sound familiar? The couple times that I ended up in the emergency room with these things, it was determined that I had low potassium levels but they were normal during regular doctor visits.Does any of this sound familiar to anyone?
    Anonymous 42789 Replies
    • August 28, 2006
    • 08:07 PM
    • 0
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  • You say that you developed this ?arm or ?hand palsy after surgery? Has anyone investigated the possibility of damage done while under anesthesia? such as from a blood pressure cuff. This is a risk with any automated B/P machine even not under anesthesia. I am uncertain of the two week delay, but you could look into that. You definitely need to be seeking physical therapy as any potential recovery could take a year or even two.
    Anonymous 42789 Replies
    • August 28, 2006
    • 09:53 PM
    • 0
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  • I have it too... i am 17 years old and some morings it hurts really bad to go any wheres. I am on a tretment for it it is called Spironolactone. The pills are 25mgs and they dont seem to be workin and have been on the for about 3 weeks could my doseage be uped or try something else. I am also on slow-k That worked for about 3 weeks then i would have an aatack and than like that before. I dony know. What kind of jobs can work for i want to be a auto mechanic or an atv mechanic are these too much for my muscles to handle or what. Someone please email me @ darciefoley@hotmail.com will some help. All help is greatly apperacate it thanks. darcie
    darciefoley 1 Replies
    • October 4, 2006
    • 02:07 PM
    • 0
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  • i am just like you According to all the reading and research I have done. It seems likely that Hypokalemic Periodic Paralysis is the problem that I am having. I want to describe this and see if anyone else can tell me if this sounds similar to what they have. The "episode" generally happens during the night and begins as a muscle weakness in the arms and legs. My eyes, particularly the left, is also affected during the severe attacks. My breathing becomes shallow as if I am breathing through a staw and my heartbeat is rapid. Though I dont ever remember being paralyzed, the weakness is extremely severe. I also notice a climax in these episodes where it feels like a spark plug fires in my head and sends it throughout my body. This generally happens a couple times before the attack subsides. Some of the other symptoms are difficulty swallowing and strange sensation in my head. Does any of this sound familiar? The couple times that I ended up in the emergency room with these things, it was determined that I had low potassium levels but they were normal during regular doctor visits. Does any of this sound familiar to anyone?
    lynda29 4 Replies
    • December 3, 2006
    • 08:06 PM
    • 0
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  • i am just like you
    lynda29 4 Replies
    • December 3, 2006
    • 08:07 PM
    • 0
    Flag this Response
  • The "episode" generally happens during the night and begins as a muscle weakness in the arms and legs. My eyes, particularly the left, is also affected during the severe attacks. My breathing becomes shallow as if I am breathing through a staw and my heartbeat is rapid. Though I dont ever remember being paralyzed, the weakness is extremely severe. I also notice a climax in these episodes where it feels like a spark plug fires in my head and sends it throughout my body. This generally happens a couple times before the attack subsides. Some of the other symptoms are difficulty swallowing and strange sensation in my head. Does any of this sound familiar? The couple times that I ended up in the emergency room with these things, it was determined that I had low potassium levels but they were normal during regular doctor visits.Does any of this sound familiar to anyone?This sounds like what I have just went through. I told the dr's primarly happens at night...and let me tell you they looked at me like I was nuts. My potassium was low too. I had a run up of test and even sent to the heart dr to have ekg, ecg, stress test, and heart monitor for two weeks. I was told that the low potassium could cause all the symptoms but why the low potassium...Well I see the dr tomorrow for more test but I have a good idea it is addisons disease. I had my right adrenal gland removed a year ago and now my left one is failing. He has monitored my potassium since before and after surgery and it was always at 4.5 not a problem till recently when it droped to 3.2 and started with these attacks. I drink a lot of poweraid to help keep my potassium up..it has 30mg per serving I drink at least 64oz every day since I started that My attacks have become drasticly less I am 36f and generaly in good health. I also found out I have a vitamin D difficencly that caused the bones to ache too. Look into it Addisons disease is not something to mess with it is very serious and can be life or death if not caught in time. Good luck to everyone.
    Anonymous 42789 Replies Flag this Response
  • Dear - I have it.I assume when you say, "I have it” you’re talking about poor muscle control due to fatigue. After reading these emails I have come to the conclusion that there is no known cure for this type of ailment. There seems to be a significant number of people with low energy caused muscle control problems. What do we do? I'm 49 and do not want to live like this. Certainly it seems that this will get worse.Joel H.Joel H._________I also have the same problem with poor leg and arm control. It comes and goes, but mostly during exercise. I can no longer jog, and walking long distances is a problem. At night I get spasums with my legs and hands. At times this wakes me up. I'm trying vitamims and staying in shape to beat this, but it's no better. The problem occurs on my right side. My foot feels as though it's asleep. my hand coordination is also affected.Has anyone received a prognosis and possible cure. I went to the University of MN Nuerelogical Dept. Meet with the head of the Dept. to make sure I do not have Ataxia, or MS. The latter is a possibility, but overall he was stumped. Any help you can offer is appreciated.Joel H.Hi, I have this. I was diagnosed 2 years ago after being hospitalized. i've been having episodes for more than 10 years and they have gotten worse over the years in that my muscles dont work well after an episode. lets chat.
    Anonymous 42789 Replies Flag this Response
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  • I have a type of hypokalemia periodic paralysis called andersen tawil syndrome.. ive been treating with prescription potassium supplements and i am about to send my blood for genetic analysis to see if they can identivy the particular gene mutation that causes this for me,, Hypokalemia periodic paralysis is considered a rare type of muscular dystrophy,, for more info you can go to the MDA sight and find some articles a bout the various conditions and research and treatment,, also the the Hypokalemia Periodic Paralysis News desk and The Periodic Paralysis Association are both excellent sources of information,,I have learned a tremendous amount from both of these places,,, I also visit a couple of FAcebook pages that are both very helpfull and you are also able to meet real people going through the same things..This is a greatformat here to talk to others,,and share experiences,, hopefully some people will come back again,,,, kattsqueen
    kattsqueen 29 Replies
    • September 19, 2010
    • 01:02 AM
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  • yes diagnosis have high fat meal you eat during this session its increase your weight.
    Chatwin 4 Replies
    • December 23, 2010
    • 07:20 AM
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  • Well... i think these teens have no money... and the wiper is broken. It is no use even if they give it back.But Id like to punch em in their faces. but it wont help. I just hope, someone will teach them a lesson to break no others posessionsUpd: thanks God, some people offered their help to charge my accumulator. Its charging now.I forgot and left the lights on. It was a wind & snowy night, so I took no attention to the lights. Silly me
    Febriesemex 2 Replies
    • February 2, 2011
    • 09:05 AM
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