Discussions By Condition: Muscle conditions

HyperKalemic Periodic Paralysis?

Posted In: Muscle conditions 5 Replies
  • Posted By: Anonymous
  • March 29, 2007
  • 09:53 AM

Does anyone else suffer the symptoms of HYPP and have had problems getting it diagnosed? I have had symptoms since Jan 2006 (I am 28), and have linked weakness and paralysis to stress, potassium foods, tiredness, rest after exercise and probably some other unknown quantities too. I also have less frequently, muscle spasms (Mytonia). I also have been diagnosed with psoriatic arthritis in 2004 but the symptoms are distinctly different from these nwe ones. NHS are crap first Neuro said nothing wrong with me, second sent me to Oxford after I specifically asked for HYPP tests, but Oxford did not do them - only an EEG which suprise suprise was normal (Duh) and still awaiting genetic blood tests which although may be neg does not mean I don't have it. It could be quickly diagniosed in 2 hrs with the oral K test but nooooooooo . . . they have to waste my time NHS money and resources looking at the wrong things! I have contacted a London specialist and awaiting tha PCT boards decision on whether they will fund it. Conflicting views from several Drs. Best one was from my 1st Neuro who Quote " It is unlikely you have it as it is a rare condition". Very professional opinion. I have had 3 Drs say it seem like I have HYPP 2 say its not and the rest don't know as never seen it. SO WHY NOT DO THE SODDING TEST!!!!! AAAAAAAAAAAAAAAAGH! Sorry it is getting me so frustrated as I had to leave 2 jobs and now on IB. This really sucks!

Anyone in a similar position?

Becki

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5 Replies:

  • My mother has had several episodes of periodic paralysis. She is an Alzheimer's patient, age 82, now in a nursing home. The first couple of times she had the episodes, her potassium was slightly low and she was malnourished. The first ones only lasted a few minutes then they seemed to increase in duration. She had not had one since we admitted her to the nursing home and has been eating more regularly. However, today I got a call and she was having an episode. It is just the wierdest thing, her whole body goes limp, she has very little muscle strenghth even in her tongue as she just mumbles and is very hard to understand. We went to the ER and nothing came up abnormal. Potassium was normal, no infection, nothing. It drives me crazy that we cannot find out what causes these.
    Anonymous 42789 Replies
    • August 19, 2007
    • 09:49 PM
    • 0
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  • I'm very new at all of this. I don't have a diagnosis yet. I have pain and muscle weakness which worsens with activity. I keep coming back to myasthenia gravis but docs say pain is not associated with it. It has been progressive in a very short time - 3 months, starting in feet to legs to arms and face. Recently have had two crisis, extreme general weakness with nausea.
    Anonymous 42789 Replies
    • September 11, 2007
    • 02:19 AM
    • 0
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  • Looks like I'm not alone. I think I have hypokalemic PP, and have had numerous low potassium readings in the ER through the years. Just discovered my lungs are in very sad shape. Honestly, I don't know whether this is myasthenia gravis or PP, but it IS going to kill me if someone doesn't diagnose me soon.
    Anonymous 42789 Replies
    • September 26, 2007
    • 04:11 AM
    • 0
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  • I started having symptoms 14 yrs ago and I am still not with a definate diagnosis. I have seen 16 different types of doctors and noone can call it anything. My current neuro says it is a type of hypo k parlysis without calling it periodic paralysis. I have muscle weakness, confusion, tachycardia, studdering, swallowing, and chwing difficulties, myoclonic jerks( that is what I call them), sleep paralysis, muscle pain...etc. I gave up trying to find out the name and now start finding a reason. If it is hypo k., then there is a reason my body expells so much K. I am going to a renal docotr to see how that pans out. I have had ekgs, emgs, cat scans, mris, all heart tests...you name it and I agree it do the test you anme above which I normally know and today can't...If they would let me sign a form knowing the dangers I would do so. I am in your boat, and I am sinking. I take Paxil for the symptoms of the muscle weakness and speech difficyties and it helps. I went to a local ortho doc today for a checkup for a broken bone and he tested my muscles in my legs by using force angainst them and he said my leg muscles were significantly weaker then they should be...no dah Sherlock. I hope you the best. paintergal73@yahoo.com if you need an hear.tired in pa:confused:
    tiredinpa 3 Replies Flag this Response
  • wrote you before didn't get entered, hope this doesn't become repetetive.I am atill searching after 14 yrs of muscle weakness, studdering, swallowing and chewing difficuties, tachy cardia, etc. I become shaky and confused, my knees give out my arms slump. I have been to 16 different docotrs and had every test known to man. My neurologist now calls it a form of hypokalemia paralysis instead of periodic paralysis. I wish they would do the oral test too, but it is ano no. I take Paxil to help with themuscle weakness and it helps a lot . I get frustrated as well, but after 14 yrs, I still keep going. I decided now to find the cause of the hypokalemia, because other illnesses cause it. I feel I have an underlyng disease that causes the low K. and the paralysis comes with it. I dunno. But we must keep going and i wish you well...keep writing.:)
    tiredinpa 3 Replies Flag this Response
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