Discussions By Condition: Rare Disases

Hyperkalemic/Normakalemic/Familial Periodic Paralysis ?!!

Posted In: Rare Disases 2 Replies
  • Posted By: Squidgeblip
  • April 4, 2007
  • 08:04 PM

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?


PS I have already posted this as an unregistered user under muscle conditions a week ago but not a single reply! Then I read it is really a rare condition ! Yoik.

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2 Replies:

  • Dear HNFP: I empathize with you...been on the misdiagnosed rollercoaster for years. I am a medical junkie and I have two thoughts: I saw a similar case on a show called medical mystseries. A young woman had very similar symptoms and suffered for years. Turned out to be Lupus which is very hard to diagnose....just a thought. The other...sometimes infections can set up shop in the body for years and slowly destroy it without diagnosis. Histoplasmosis is one that can harden lymph nodes with calcifications and cause intermittent pain and paralysis. Good luck.
    Anonymous 42789 Replies Flag this Response
  • Greetings from an Andersen's sufferer...Muscular Dystrophy Association has the global lead on researching HKPP and they're doing wonders with it. Hypo, Hyper, and Norma are actually three different disorders (with three different genetic profiles) that all "look" the same during an attack. Something else to consider is that if you have any wierd fainiting or dizziness spells, "stamina issues" unrelated to musculature, or any odd "cardiac-type" symptoms you may actually be Andersen-Tawil Syndrome which is yet another genetic sequence.Contact MDA through their website; they have loads of info on all these disorders (though it does seem as though you have Hyper symptoms, only a Doc can determine that variant for certain). Good Luck!www.mda.org - MDAwww.rarediseases.org - National Organizaton for Rare Disorders, USA
    Anonymous 42789 Replies
    • January 6, 2009
    • 03:59 PM
    • 0
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