Do Mito symptoms fluctuate?

[Seeker]

Been told I have Mitochondrial Myopathy by neuro, who I'm seeing tomorrow. From what I've read, Mito doesn't generally wax and wane, but want to see what actual experience of others is, since I'm not convinced that I have Mito, as diagnosis was based on pretty soft findings.

Also, can Mito mimic ALS or Multifocal Motor Neuropathy, for anyone who might know?

Thanks

[Prop1]

My symptoms fluctuate all the time. It all depends on what activities I've done, what my stress level is, what the weather is, and what food I've eaten. What ever info you read that gave you the impression it doesn't fluctuate was wrong. My Mito flared to the point of having to seek medical attention in 1995. Within months it had pretty much gone into remission. Then it flared up again in 2001 due to high stress and an overly physically demanding career. It ultimate caused me to take disability in 2004. My sister has the same thing and had to take disability in 2006.

Being that most all muscle diseases have overlapping symptoms, it's easy to think (as I did) that it is one of the other ones. Mito is known for it's ability to mimic other diseases. You can check out my thread on my symptoms and compare them to yours.

The main thing is when you have a flareup, try to remember what you did the past week and compare it to other flareups. There's bound to be a pattern. The sooner you can correlate these flareups to a cause, the sooner you will have some control over it.

Food wise, I have to keep fat low, and carbs and protein high. I have to avoid stressful situations, and physical activities have to be done in spurts with long periods of rest afterwards.

You're lucky you found a doctor that knows or at least is willing to consider Mito so soon. I had doctors up until the last two that treated me for other things and only messed me up more.

[Kira]

My mito fluctuates a lot, too. I have learned to identify some of the things that trigger flares, and to avoid those triggers as best as I can. Things like exertion, illness, fever, vomiting, going more than a few/several hours without food, getting overheated, etc... these things have all triggered flares for me in the past. For me, a "flare" can mean something as minor as being really fatigued and achy for a few days, or something as major as a severe attack of rhabdomyolysis with big electrolyte disturbances, metabolic acidosis, mental status and neurological changes, intractable vomiting, heart rate and heart rhythm changes, inability to use affected muscle groups, severe pain, abnormal blood clotting labs ("DIC"), and high risk for acute kidney failure. My disease affects multiple organ systems.

The thing about mito is that it is considered a chronic, progressive, multi-organ system disease... but that doesn't mean that it is always steadily, gradually worsening from day-to-day. For a lot of people with mito, it is more like... you have a flare, but then you recover and get almost back to your level of functioning from before the flare... then you have another flare, and again you recover to almost where you were before that flare.... In other words, you lose a little more function with each flare, but do have periods of partial recovery in between. And, sometimes, you DO manage to recover back to how you were before the flare... Or, other times, they will figure out an effective way to treat one of the problems your mito is causing, and you'll do a lot better for a while (this happened for me when we started treating my autonomic dysfunction).

So, that's the long answer.

The short answer is that, yes, mito symptoms do fluctuate.

[Brandon1234]

I am now 37 years of age, I have had a 10 year ,history of muscle twitching, weird weak feelings in my legs, yet I can run miles, climb stairs (no problem) holding my kids, etc.

Last year I had an episode of my hands feeling weak, un-coordinated, etc. lasted about 4-5 months, the more I used them, it went away.

Recently over Labor Day weekend (couple
months ago) after very heavy exertion of moving my business to a new location (alone) like an idiot, I started getting very weird feelings in my legs, my knees ache, feel un-coordinated when standing
and performing fine motor tasks, etc. but are fine climbing stairs, running, holding heavy objects and walking, etc.

I have had 7 emg's/NCV's over the course of 10 years, CPK's, Aldolase, all Autoimmune tests, 7 mri's of Brain, stem, spine, etc. ALL Normal.

However, every day now, my legs hurt, feel like my knees are going to give out when I stand or walk, yet running is fine and lifting heavy things and walking is fine, not sure how to explain it. Rising from a chair, bed, etc all fine.

Any ideas? My neuro who is a neuromuscular/ALS specialist at MGH says NO neuromuscular disease! But how can I have all these symptoms with no explanation? Usual after a "flare" atleast I think that is what it is, I regain all normal function. Would any of these tests have picked something up by now?

Again, any ideas would be greatly appreciated!

Frustrated!

Brandon

[Prop1]

I am now 37 years of age, I have had a 10 year ,history of muscle twitching, weird weak feelings in my legs, yet I can run miles, climb stairs (no problem) holding my kids, etc.

Last year I had an episode of my hands feeling weak, un-coordinated, etc. lasted about 4-5 months, the more I used them, it went away.

Recently over Labor Day weekend (couple
months ago) after very heavy exertion of moving my business to a new location (alone) like an idiot, I started getting very weird feelings in my legs, my knees ache, feel un-coordinated when standing
and performing fine motor tasks, etc. but are fine climbing stairs, running, holding heavy objects and walking, etc.

I have had 7 emg's/NCV's over the course of 10 years, CPK's, Aldolase, all Autoimmune tests, 7 mri's of Brain, stem, spine, etc. ALL Normal.

However, every day now, my legs hurt, feel like my knees are going to give out when I stand or walk, yet running is fine and lifting heavy things and walking is fine, not sure how to explain it. Rising from a chair, bed, etc all fine.

Any ideas? My neuro who is a neuromuscular/ALS specialist at MGH says NO neuromuscular disease! But how can I have all these symptoms with no explanation? Usual after a "flare" atleast I think that is what it is, I regain all normal function. Would any of these tests have picked something up by now?

Again, any ideas would be greatly appreciated!

Frustrated!

Brandon

That's not sounding like Mito. Some of those test should be abnormal. Try looking into Fibromyalgia.