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Hypokalemic periodic paralysis

My husband who is 64 has been sick for about 3 months now. We have been to a million doctors and back and forth to the emergency room to no avail. I have searched the internet and forums such as this one, night after night. I have finally found a diagnosis that sounds like my husband's symptoms. Hypokalemic periodic paralysis is inherited. My husband's father died over 30 years ago with some muscle problem. They never knew exactly what. My husband has intemittent severe weakness. One moment he is absolutely fine meaning he can work, drive, stand and be as pysical as he wants and the next moment, he is so weak he cannot do anything.It seems as though the symptoms occur often in the morning. The minute he gets out of bed the weakness begins. He has had a heart attack and has a pacemaker and defibrillator. This illness is extremely debilitating and he is becoming so depressed. If anyone knows anything about this condition, please give us some information along with what we can do to lessen these attacks.

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Avatar universal
Well my first question is, what are his potassium levels?  Do they go way down when he has the spells of weakness?  I have heard of this syndrome as I have to take a very large dose of potassium supplements every day (120 meq down from 160/day), and the endocrinologist mentioned it as a very rare disease.  I don't have any paralysis though, although I do have muscle weakness.  Has he seen a neurologist to rule out other muscle problems?  I assume his blood pressure is ok during his spells, and not too low?  Hmm, I will have to think about this one.
Avatar universal
Ok, I googled it and came up with two types of periodic muscle weakness.  One is hypOkalemic, where the potassium is too low, and the other one is hypERkalemic, where the potassium may be too high or normal during attacks.  However, both seem to start in early childhood or adolesence.  Medline states that intermittent muscle disorders that do not begin til adulthood are  rare and are usually due to other causes.  Has he had an EMG and muscle biopsy?
187666 tn?1331176945
Reminds me a bit of my friend when he first developed MS. That was quite a few years ago but he had unusual periods of weakness, particularly one or two limbs. Also occasional vision problems that seemed to come and go. There are other things out there that are not cardiac related that may be the problem. Hope they find an answer for you two soon.
Avatar universal
Of course, I don't want to hear anything about MS. You stated that there were other things out there that are not cardiac related that may be his problem. Can you give me some ideas about other problems?
Avatar universal
I know that this is an old thread. However, I have medical problems much like your husband's problems. I am 21 years old and cannot go to college because of these problems. I've been tested for periodic paralysis and have come up negative so far, but they cannot test for all forms. I would like to know- what was your husband eventually diagnosed with?
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