General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 02-19-2014, 05:18 PM #1
nemsmom nemsmom is offline
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Hi Nemsmom, do your triggers always bring on an attack? HKPP is something I'm wondering about as it fits in many ways though not all. I'm keeping a note of food at mo and trying to reduce carbs and sugar to see if it makes any difference - suspect it won't but worth a try :-)
There's more than one form of periodic paralysis linked to potassium and each responds to different triggers and has different symptoms.

I do not always have an attack from eating carbs. One of my biggest trigger is rest after exercise. But I find that I react a lot stronger to a combination of triggers. If I combine a few of my triggers, I will definitely have an attack. Of course there are a lot of medicines that trigger attacks, those attacks are the scariest.

Try keeping a diary without changing your normal routine. It might be helpful. Then change your diet or routine one thing at a time, that will make it possible for you to find your triggers.

If you bring that without bringing in any information about a certain disease to your doctor, you're more likely for them to listen. They tend to hate when their patients come up with the answers before they do. Do you have a good doctor you're working with?

I hope you find your answers soon! I'm always here if you need someone to talk to.
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Old 02-19-2014, 08:35 PM #2
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Thanks nemsmom :-)

I've mentioned the idea of periodic paralysis to my gp - she's referred me back to neuro as these episodes are just becoming more and more frequent (roughly every 3rd day at the moment) and said she would mention PP in the letter. I'm waiting for an appointment.

So far this neurologist has insisted he is correct in his diagnosis of chronic migraine syndrome - I'm hoping he's prepared to at least consider other things as I've tried his drug suggestions and continued to get worse :-(

I've tried, over the last week or two, having much less carbs and sugar, but the attacks have been as frequent. I'll try your suggestion of eating as I normally would and see if there's a pattern or trigger I can pick up.

Thanks for your help :-) I'll keep you posted.
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nemsmom (02-19-2014)
Old 04-19-2014, 07:51 PM #3
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I have an appointment with the same general neuro consultant again on 27th May. I had 11 episodes in March in the end, and after some reading around, decided to start taking Magnesium, Vit B2 and CoQ10 (4th April) - everything I've read said 3-4 months to have any effect but April seems to be much fewer episodes so far - yippee!! - only 4 episodes so far :-) could just be a coincidence but don't care! Will let you know how appointment goes - want to get off these other meds, cos they're clearly not working, and get something else that does work!!
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Old 03-26-2014, 12:52 PM #4
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I have intermittent episodes of paralysis of my right leg. It lasts anywhere from a couple weeks to 14 months. When it happens, I can't move my leg or feel anything. It will not hold me up or walk, and I end up using my wheelchair. No doctors can figure it out. I was scanned every way possible when it first happened in 2010, and everything was negative. Since, I've had a pacemaker put in and cannot have follow up MRIs. I have numerous other health issues (some which mimic MS type disorder, think bladder), orthostatic issues, autoimmune issues and recently got diagnosed with intracranial hypertension and had a VP shunt put in three weeks ago. Crazy world we're living in, and I'm one of the test subjects!
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Old 03-26-2014, 04:47 PM #5
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I have intermittent episodes of paralysis of my right leg. It lasts anywhere from a couple weeks to 14 months. When it happens, I can't move my leg or feel anything. It will not hold me up or walk, and I end up using my wheelchair. No doctors can figure it out. I was scanned every way possible when it first happened in 2010, and everything was negative. Since, I've had a pacemaker put in and cannot have follow up MRIs. I have numerous other health issues (some which mimic MS type disorder, think bladder), orthostatic issues, autoimmune issues and recently got diagnosed with intracranial hypertension and had a VP shunt put in three weeks ago. Crazy world we're living in, and I'm one of the test subjects!
Sorry you're going through the crazy world of unknown medical problems as well.

I don't think attacks of hypokalemic periodic paralysis last that long, but you could always bring it up with your doctors to see if it might be whats wrong.

I hope you find out what's going on soon. I know it can be very frustrating.
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Old 09-21-2015, 03:12 PM #6
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Hi jusf,

It sounds like periodic paralysis. Have you already seen Prof Mike Hanna at the National Hospital for Neurology and Neurosurgery in London? He is the best in the UK on this area.
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Old 10-03-2015, 01:52 PM #7
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It sounds like Functional Neurological Disorder (FND). It also has several other names: NEAD, Conversion Disorder, Pyschogenic Non-epileptic Seizures (PNES), Psychogenic Movement Disorder, etc.
**

I hope you find the answers that you need. If it is the above, it's a very long road!!

Last edited by Chemar; 10-03-2015 at 03:34 PM. Reason: **Neurotalk Guidelines for new members redirects/links
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