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Can adult-onset mito disease be episodic? Cause Dystonia?

Hi I am new here, with questions.  My name is Tatia, I'm a 41-y.o. female.  For 10+ years I have been experiencing both dystonia symptoms and severe weakness and fatigue, in an episodic fashion.  My current neurologist thought the weakness/fatigue episodes might be periodic paralysis.  Neuromuscular specialists said no, we can't find any abnormal K+ values, and tell me no disorders in their specialty would cause the dystonia.  Movement disorder specialists keep telling me that dystonia can't cause weakness/fatigue.    I have read, however, that mitochondrial disease can cause both.

But can it be episodic?  One day I can play competitive racquetball for 45 minutes one day without any trouble.  Another day, I can't even walk to the mailbox.  I have episodes of severe weakness (can't raise my eyelids, can't walk except to rock my body back and forth to waddle across the room, even breathing is exhausting.)  These episodes often have a trigger and an abrupt onset.  Sometimes they resolve just as abruptly.   I do often have mild to moderate fatigue on a regular basis, that is getting more frequent and intense as time goes by.  At first, I would feel somewhat lethargic maybe 2 or 3 days a month.  Now it's 4-6 days a week.  But on the good days, I still have full function and energy levels.

Is dystonia ever associated with adult mitochondrial disease?  And if so, is it a constant dystonia or does it come and go?

Advice would be appreciated immensely!

Tatia

cellolover's picture

cellolover

06/21/2010

 I don't have much dystonia (at least I don't think any of my funny muscle stuff is dystonia) but I do get your episodes describing extreme weakness to a tea. I first started getting them my freshman year of college and at that point my non-crashed state sounds similar to yours. While there is still a big difference between when I am in an episode and not, I am no longer able to be as active as it sounds like you sometimes are. Just talking to others who have mitochondrial disease I have noticed that most people who get these weird episodes have dysautonomia secondary to their mito. You might check out wheredidigetthislemon.blogspot.com. It is written by a lady who has dysautonomia and she is very good at explaining things as well as giving suggestions to help people feel better. Best wishes on figuring out what is going on and feeling better!

beck7422's picture

beck7422

06/23/2010

It is a common doctor myth that people with Periodic Paralysis have their Potassium levels in their blood serum go out of the normal range. 

If you paralyze while in the normal range, then Periodic Paralysis is even more likely.

The following is a video of a severe Periodic Paralysis attack. 

http://www.periodicparalysis.org/english/view.asp?x=555&mid=181

 

It is unknown if I have Hypokalemic Periodic Paralysis - Plus or Mito Disease, but my attacks look EXACTLY like the one in the video, but often much worse.  If I have Hypokalemic Periodic Paralysis - Plus, there is thought to potentially be a Mitochondrial component to the problem.  Hypokalemic Periodic Paralysis - Plus are those that benefit from a low carbohydrate diet, respond positively to potassium, are lidocaine resistant, have weakness/paralysis attacks, and sensory problems. 

The Doctor in the video has the Classic form of Hypokalemic Periodic Paralysis.

Tatia's picture

Tatia

07/30/2010

Rachel,

Thanks for your input.  It has been very helpful.  Do you also have dysautonomia?

Tatia

Tatia's picture

Tatia

07/30/2010

Hi Beck,

I'm thinking maybe we spoke at length at the PPA conference in Florida, and I got the link to this website from you?   Or you have a "twin" on that listserv :0) 

I don't get as bad as Dr. you-know-who but the presentation looks very familiar.  I have never been unable to sit up unassisted.

Thanks for all you do to help educate others.

Tatia

cellolover's picture

cellolover

07/31/2010

Tatia, Yes I have a lot of dysautonomia. I have heat and cold intolerance, high heart rate on standing (sometimes even sitting), I have to be careful in the morning or my gut just stops, and I am almost always dehydrated no matter how much water and salt I consume. In me all these symptoms are at least partially caused by dysautonomia. 

Beck, I had never heard that you could have HPP and still have a normal Potassium serum level. A few years back a couple of doctors thought I might have that but when my levels were on the low end of normal during an episode it was written off. Hmm. My crashes look like the latter part of the guy's on the video except that while I can't move voluntarily I get a lot of involuntary jerking. Do you feel like your limbs are really heavy during and after an attack? I also find it interesting that you mentioned carbs because my body does not react well to too many carbs. When I am in a crash like that I have someone bring me a drink that has d-ribose (a type of sugar my body can handle) and electrolyte drops that have at least some potassium in them. If you don't take Potassium will your episode just keep getting worse or will it eventually go away?

xomissmelxo's picture

xomissmelxo

02/05/2012

Yes!! I know its been awhile but I hope you see this. I was diagnosed recently but mine is very similar. Excercise or illness can lead me to barely be able to get off the couch the next day. Without illness or overexhertion I feel fine but can be triggered. My lactic acid level shoots up for 24 hours causing the weakness but I can resolve quickly. Docs thought I was nuts!!