Hi reddit!

I was officially diagnosed with mitochondrial myopathy when I was 18 through a muscle biopsy. However I have been experiencing symptoms of my illness since birth. Mitochondrial disease is a chronic, progressive disorder that occurs when the mitochondria of the cell cannot produce enough energy for cell or organ function. Mitochondrial disease can be inherited from a person’s mother (mtDNA), from both parents (nDNA), can occur spontaneously, or may result from exposure to toxins, medications, or other environmental triggers. There are about 40 mutations in the mtDNA and 300 mutations in the nDNA that have been identified and linked to mitochondrial disease. However, it is likely there are many more that have yet to be discovered. My specific mutation has not yet been categorized as my official diagnosis is an undiagnosable mitochondrial myopathy. The doctors believe that I my mutation was spontaneous as I am the only one in my family affected with the illness.

The major symptoms I experience are fatigue. I often struggle to get through the day energy wise and I am always tired. I have to sleep about 10 hours a night to function the next day, and 12 to feel at my best. I also suffer from gastroparesis and dysmotility (my stomach has difficultly moving food along the digestive tract), this causes severe nausea, vomiting, and stomach pains. I use a J tube for feedings overnight when I am unable to keep anything down. I also experience chronic musculoskeletal pain in my legs, arms, shoulders, back and neck that range many where from a 3 to 6 on a pain scale at any given moment. In addition, I also have a chronic migraine headache that has not gone away since roughly 2008. Most of time the headache sits at about a 2 or 3 on the pain scale and I am able to ignore it, but often times it spikes. I have had problems with my heart as a child, and various other issues throughout the years.

There is no known cure for Mitochondrial Disease and it is a degenerative illness that overall, will only get worse with time. And there also is very little research being done as the illness is relatively rare. I am mostly here to raise awareness as Sept 14th- 20th is international Mitochondrial Disease Awareness Week! So AMA!

Proof: http://i.imgur.com/BYOtvWm.jpg

If anyone is interesting in donating to mito research I will just leave this here: https://secure.umdf.org/site/apps/ka/sd/donor.asp?c=8qKOJ0MvF7LUG&b=7966007&en=joLIIKNoH3IALNOpG4IBJOOnFeKVK0PyEkLLLPPrE7KDJPOzFsG

EDIT: Hey everyone, thanks so much for all the support and questions! I'm getting a little tired now, so I'm going to go take a nap. But I will be back in a little while to answer more questions! Thank you all so much for asking such great questions and helping me raise awareness.

EDIT 2: Wow thanks guys, my brother told me we made it to the front page earlier! Thanks so much for helping me raise awareness for my disease. It means soooo much to me. And thank you for whoever gave me the gold, it's so kind of you! I'm going to keep doing my best to answer your questions. You guys are asking some really great ones!!

EDIT 3: Ok, I'm off to bed now everyone, I'm pretty knackered now. But I will continue to answer all of your wonderful questions in the morning! So keep them coming reddit, you're doing wonderfully. Good night.

Comments: 629 • Responses: 74  • Date: 

iEuphoria389 karma

Thank you for doing this AMA, if it weren't for you I would not have known that it was international Mitochondrial Disease Awareness Week.

What is your average day's routine like?

How are you today?

Trapped_Ghost_Singin291 karma

Great questions! It really depends on the day of the week. I work a job as a administrative social worker about 18 hours a week. I work three 6 hour shifts a week. On a work day, I get up and get ready for work. I eat breakfast (or not depending on how nauseous I feel) and take my medications. I get dressed for work, pack up my feeding tube to go in case I get dehydrated while at work. I work from 8 to 2pm and usually get home around 2:30pm. Then I take a nap afterwards. After that, I take my afternoon meds. Then I usually watch tv or reddit until dinner at about 6:00 pm. I eat, then again maybe reddit or tv for another hour or so and I'm usually in bed by 8pm. There is a lot of running to the bathroom to throw up after meals here usually.

Today is one of my days off, and I mostly just spend the day sleeping, watching tv, reading or redditing. I try to recoop as much as I can on my off days.

I am doing okay today, my headache is under control, and the muscle pain isn't too bad. My stomach feels off and I might be slightly dehydrated but other than that I can't complain too much

iEuphoria161 karma

You are a trooper. Especially for holding a job, that doesn't seem easy with constant fatigue and headaches..

Sorry if this next question is a bit ignorant: Have you had any major side affects from throwing up? Esophagus, stomach acid, etc..

Trapped_Ghost_Singin138 karma

It's not ignorant at all. Yes, I have had a lot of side effects from the vomiting. Several times I have aspirated stomach acid into my lungs, and it has caused bleeding in my lungs. When that happens I start coughing up blood and have to go to the hospital. I also have some enamel damage to my teeth. I use the pronamel tooth paste now to prevent further damage.

myGRUDGE44 karma

oh wow, you said you use a feeding tube right? Does nausea occur after using that, or just regular food?

Trapped_Ghost_Singin77 karma

The nausea is actually the worst when using the tube because I have to keep it on for many hours at a time. I have to use a slow rate otherwise the nausea and stomach discomfort is too much. It's like if you just kept eating and eating and eating, even after you're full. Only you can't throw up from your jejunum to relive the discomfort.

celocanth13126 karma

My mom is currently in the end stages of Mito, her heart is dying, she only started showing symptoms when she was in her late 40's. And she has had the exact same diagnosis as you with her variety being so rare it's never been categorized and no one in our known family has been diagnosed with it (although there are problems with this type of history as Mito was only recently discovered). Massachusetts General Hospital is keeping cultures of her cells alive indefinitely for research purposes and to hopefully find a cure or better treatments one day.

I don't really have any questions but I just kinda wanted to say this and feel free to talk to me about it. I can't really say it's going to be okay or stuff like that because I've had to watch someone slowly die for almost 6 years.

How are you taking it? Resubmitted with a question.

Trapped_Ghost_Singin158 karma

I'm so sorry to hear about your mother. I can only imagine what it's like to watch someone you love die from such a terrible illness. My doctors are doing something similar with my biopsy cells. As for how I'm taking it, some days better than others. While I was in college I saw a therapist to deal with some of my issues. Sometimes, I'm angry at everyone around me for being healthy, and sometimes I feel depressed. But for the most part, I just try not to think about it too much. I am living my life on my terms until I cannot. Which is why I went to college and got a job even though my doctors told and still tel me its foolish.

flyingretard50 karma

You can sex have?

On a side note, I appreciate you taking time out of your day to do this AMA and making this disease known to the Reddit community (including me). Don't strain yourself!

Trapped_Ghost_Singin95 karma

Hahahahah, yes. I can. But it makes me very tired.

kismetjeska37 karma

Sorry to be a butt, but can you have kids? And, if so, would you want to/ would your disease be passed on to them? Sorry if that's too personal a question. Thanks for doing this AMA; you seem like a wonderful person.

Trapped_Ghost_Singin136 karma

Well technically yes, I can have kids, but it would be a very difficult pregnancy for me for both the baby and me. If I were to have children they would likely be just as ill as me, or worse. So if I were to do that I would need to go for genetic counseling and probably would chose to not conceive naturally. But even if I were able to have a perfectly healthy kid I think I would find it tough to give a child the type of energy and attention they need and deserve. So for all of those reasons I am not going to have children.

richardwrinkle45 karma

Didn't former MLB baseball player Rocco Baldeli have a mitochondrial disease? He had to retire I believe due to chronic fatigue? I am sure you have been to many specialists but have you had any success with changing your diet to help combat some of your symptoms? I have read that some people have had success with this. Good luck!

Trapped_Ghost_Singin50 karma

He may have, I don't really follow sports much. I have met Joe Wise U.S. Paralympic Swim Team and is a 19-time American Record Holder at the annual mitochondrial symposium.

My diet is very limited due to severe food allergies and having my gallbladder removed a few years back. There are some foods that's the doctors recommend that are full of vitamins that improve mitochondrial function. I try to eat these as much as possible, but not much stays down by mouth, so I take a lot supplements through my tube.

Imperator_Penguinius13 karma

Possibly a dumb question, but are the allergies and the removal of your gallbladder related to your illness or are they stand-alone issues (I'd assume sort-of-stand-alone-but-also-indirectly-disease-related, but I can't be certain)?

Trapped_Ghost_Singin23 karma

I am unaware if food allergies are related to mito, but yes, my gallbladder all but shut down due to the mito. When they took it out they found it was only functioning at about 10%.

itsallgoodie39 karma

What is your biggest goal in life?

Trapped_Ghost_Singin112 karma

That's an interesting question. Up until recently it was to graduate from college, which I have just achieved in May. Right now I guess my biggest goal is to try and make a difference in the lives of people I help at my job as a social worker. I would love to go and get my master's in social work so I can work as a medical social worker, but right now that's not really physically feasible.

coldmtndew38 karma

Is this disease eventually fatal? Also I would like to say that I'm sorry that this happened to you especially at such a young age.

Trapped_Ghost_Singin55 karma

It can be, and it very often is. There are no definite timelines for the progression of the illness, everyone with mito is affected very differently and the severeness varies from person to person. It is often the inability to fight off other illnesses due to weakness of the immune system and the body that kills mito patients.

TheLabMix33 karma

Hi there, it's fantastic you're doing this AMA and getting some awareness out into the world for Mitochondrial diseases. I did my PhD in mitochondrial biology studying mitochondrial gene expression, if you have any scientific questions, although you seem very well-versed as is!

Have you gotten a genetic diagnosis? Do you know if your mutation is in mtDNA or nDNA? In the UK, there were several mitochondrial units that regularly did genome sequencing in order to pin down the exact genetic mutations that were causing the patient's mitochondrial disease. Which is not to say we always knew HOW the lesion was affecting mito physiology, but it fueled much of the research we did. Are you involved with any research efforts? Much of the difficulty in treating these types of disorders is the lack of ability to manipulate the organelle itself in an experimental context. Towards that end, patient samples play a HUGE role in research, because they may carry mutations that we as researchers couldn't otherwise engineer in the lab. So mitochondrial research owes a massive debt to the patient community. So thank you for your outreach, and linking to donation pages. Hope you keep going strong!

Trapped_Ghost_Singin16 karma

I do not have a genetic diagnosis, I wish I could give you researchers more information.They did send away for the sequencing,but unfortunately my mito doc in Philly left the hospital and we never got the results as I was transferred to Penn Med due to my age. My muscle biopsy tissues is being used for research at Children's Hospital of Philadelphia. My mother and father also contributed blood work and issues samples to help their research.

Thank you so much for all that you guys do for the mito community. The researchers will be the ones to find the treatment and cures.

throwawaystfni31 karma

I think I finally understand why the mitochondria is the powerhouse of the cell. Have you found that different foods/drinks help with energy?

Trapped_Ghost_Singin29 karma

Yes, certain foods are easier to digest and do give me more energy. Carbs are one of the easier things to digest, so things like pasta, cereal breads, potatoes tend to give me a little more pep in my step. I drink a lot of gatorade to stay hydrated which has a lot carbs as well. Protein is harder to digest, and some forms like red meat and pork are very difficult to digest and take more energy than they seem to give.

deni_an16 karma

Do you try to get protein from non meat sources? Some grains like quinoa are complete proteins or pairs of foods like beans+rice or peanut butter+wheat breads.

Trapped_Ghost_Singin39 karma

I eat quinoa, but I am allergic to beans, peas, eggs and peanuts, so most of the non meat proteins are off limit unfortunately


Jesus Christ, you got the shit-end of the genetic dice roll.

WolfofAnarchy10 karma

I laughed, and now I feel super-bad. Damn it.

Trapped_Ghost_Singin17 karma

It's ok, I laughed too

majesticturtle5528 karma

You are a strong person. Very personal question here- are you afraid of death? Sorry to be so heavy.

Trapped_Ghost_Singin73 karma

No, I'm not afraid of death. Not really. I think death is a relief for most people.

poradaka22 karma

Thanks for doing this AMA! Over at Seattle Children's Research Institute we're also trying to raise awareness of mitochondrial disease and the need for more research - we hosted a pediatric mitochondrial conference in Seattle last week and several families attended to hear the latest in patient care and research. Lots of optimism...but still a ways to go.

So my question...for any families who may have just received word that their child has mitochondrial disease, what advice would you give them?

For anyone interested...here's a clip from one of our mitochondrial researchers re: hope for what research could do: http://www.youtube.com/watch?v=x77EMtGYI4w

Trapped_Ghost_Singin13 karma

It's so great to see the mito community reaching out to those affected. My advice for parents: Do your best to treat them like a regular kid. Let them explore, let them learn, let them make mistakes. As much as your first instinct is to hold them tight, you have to give them some time to really experience life.

Al_Brown_AKA16 karma

Do you have any thoughts on Justina Pelletier?

Trapped_Ghost_Singin22 karma

Oh boy do I ever. I am so glad that they finally released her back to her parents. Unfortunately, with this condition, misdiagnoses are rampant. Many doctors are also thought that my symptoms were psychologically in nature and not physiologically based. Some of the doctors also accused my mother of munchausen by proxy when I was younger. All of which we unfounded. However, as a social worker, I do think that something else was going on there that the media was not telling us. Either way, I really hope she is doing better now.

SoothingKarma16 karma

I also suffer with the exact same disease and my symptoms are very similar to yours.... It makes life tough for sure. I was lucky to not have expirienced the disease since birth and lived a relatively normal life up until I was 25 years of age. Looking back there were loads of tell tale signs that I just put down to being unfit, not spending enough time working out etc. But as the disease really took a hold there was no question that I had inherited the diaease from my Dad. Sleep deprevation is the worst and less than 10 hours a night and I really suffer the next day. Out of interest and I know this may be a personal question but I am perscribed temgesic, baclofen, tramadol 150sr, buprophen patches (and then others to combat the side affects of the above). Have you ever been prescribed anything other than the above that you feel has worked well for managing your pain?

Finally I can tell you I wholeheartedly feel your pain. I sometimes wake up in the morning and for a split second think that I am normal again until the wave of pain washes over quite literally every muscle in my body. I manage well though, have a bed in my design studio and have a loving (and very understanding wife) and 2 children that I hope to my heart that will not be cursed with the same fate. It is comforting to know that my Dad and I are not on our own and despite feeling like an old man in a young mans body we can still get about our daily business all be it with sloth like speed :)

How I long to not feel pain.......

Trapped_Ghost_Singin8 karma

Oh god, I totally understand the the old person in a young body thing. I actually explained mito to some of my friends as being like if you put a bad engine and parts into a brand new body of a car. I may look all shiny and new, but on the inside my parts are all rusty. I use Gabapentin and Soma to manage my pain. Soma is a recently addition that I have found super helpful. I'm so sorry, you have to experience mito. It's such a crappy disease.

Redletteroffice13 karma

My sister had this condition, but passed away when she was very young, 6 years old. In one sense I really hated reading this, because it gives me a deeper knowledge of what she suffered, even though she couldn't communicate it herself. But in that same vein, you've given me an insight into her I never had, and a new closeness through hearing her pain articulated.

Thank you for doing this AMA, I wasn't aware of the advocacy groups, I just sent a request to volunteer some of time. I don't really have a question, so I'm just going to end this with the correct punctuation so that I don't get deleted?

Trapped_Ghost_Singin7 karma

I'm so sorry to hear about your sister. I'm glad I could have been some help in bringing you closer to her hugs if you ever need to talk, PM me

MisterParty13 karma

I'm very curious about wellness so forgive me for focusing on your eating routine.

Do you try to eat energy-dense foods as a result of not being able to pass food well? Also, given that your mitochondria have difficulty using/producing energy at the cellular level, how does eating lots of junk food affect you? Can you still gain weight? Or does your body use every scrap of energy in your food and still not have enough to process?

Lastly, have you ever tried making homemade vegetable juice to improve your overall digestive system? Just a thought.

Trapped_Ghost_Singin15 karma

Fortunately it seems that I do not difficulty keeping on weight. I did before they put in the j tube, and I'm also on some medications that can cause weight gain. I get a lot of my calories from formula run through the tube at night. I would say that I eat like a regular person would, except that a lot of it comes back up. I have to drink a ridiculous amount of gatorade to stay hydrated so I imagine that adds a lot calories to my diet. Fatty foods make me very sick. Especially red meat and pork. My stomach just can't digest it and it just sits there for hours, until it comes back up. I pretty much avoid that kind of food in general. I have not tried that, but thank you the suggestion.

kierandunne1112 karma

What is the one thing you wish you could do but can't due to your circumstances?

Also, sorry this happened to you. I'm a similar age and I can't imagine the difficulty you must face every day. You're an inspiration

Trapped_Ghost_Singin22 karma

Travel. God what I wouldn't give to be able to travel the world and not have to be concerned about having a mito crash while away and being too far away from my specialists. Or worrying about what I'd do if the g-j tube broke or malfunctioned. I would love to see Europe.

isakitty12 karma

Hi there, and thanks for doing this AMA. Just wanted to say that I'm doing my doctoral research on mitochondrial function, specifically the mitochondrial fatty acid synthesis pathway. Do you have any idea what part of mitochondrial function is altered in your condition?

Trapped_Ghost_Singin11 karma

My doctors really aren't sure. I don't have a specific enough diagnosis for that unfortunately. It seems like I have a mutation not yet known to the community.

bongarong11 karma

Have you looked into medical marijuana to combat some symptoms? Or would that be a big no-no

Trapped_Ghost_Singin20 karma

I have looked into, but not seriously, and here's why. I do not like feeling out of control of my mind, I do not like the way being high makes you feel. I haven't smoked weed, but I've had to use other opiates in the past to manage pain. It's a psychological thing for me, I am so out of control of my body, that I feel the desperate need to be in control of my mind. But I appreciate the advice from all of you seeking to help me.

patrickkevinsays20 karma

There are forms of medical marijuana that don't make the patient feel "high". The two main compounds in marijuana are THC and CBD. THC makes the person achieve that "high" feeling that you are talking about. CBD is the other compound that has been found to help medicinally without making the person feel high and out of control of their own body/thoughts. I think that looking into this would be a worthwhile pursuit personally. There are forms of CBDs that don't need to be smoked either. You could simply take an activated pill full of CBDs. Ask your doctor about this/research it yourself. There are tons of resources out there regarding this subject.


Trapped_Ghost_Singin7 karma

This I would be interested in. Thank you.

ladypenko11 karma

How many different diagnoses did you go through before they reached this one? I am 28F, and was diagnosed only two years ago after twelve years of multiple separate diagnoses of others illnesses (fibromyalgia, seizure disorder, chronic nausea and depression to name a few). I still feel like a lot of doctors just don't "get it". Are you experiencing this after your diagnosis as well?

It is very rare to find someone else with this. I feel like you are my spotted zebra.

Trapped_Ghost_Singin11 karma

Mostly for me it was a case of listing all of the illnesses I don't have. I have been tested for everything under the sun and nothing ever came back positive or conclusive. I had a lot of diagnoses of the symptoms, migraine headaches, and such, but I none of the symptoms ever added up in one until they got to mito. My docs were all pretty reluctant to give me any diagnosis right or wrong, just because there was too much that didn't fit.

HAHAH I call myself a unicorn because you know the saying that doctors' always say "when you hear hoof beats, think horses not zebras?" Well I'm a unicorn because they they know it's not a horse, or zebra, or giraffe, or any other hoofed animal they know about. But they still hear hoofs, so it must be a unicorn.

Toblerone4410 karma


Trapped_Ghost_Singin13 karma

Yes two. Rugby and Autumn :)

lewdite9 karma

First I want to say thank you for doing this AMA, I know first hand how difficult GP can be. What foods do they suggest you eat? When did you develop the GP? Can you remember a time when you felt completely "normal?" How long ago was that and how do you feel now as a percentage of how you felt then? I'm sorry you have to suffer :(

Trapped_Ghost_Singin8 karma

Lots of non fatty foods are what my docs recommend. I don't really know that I have ever truly felt normal. I've felt normal for me in my first two years of high school, but I've always had relatively little energy and problems with my stomach. I would say currently I'm at about 60% of my old baseline in high school was.

jxj243 karma

Have you and your doctors discussed total parenteral nutrition (TPN)?

I have known some people on it for weeks to months when their Crohn's made eating nearly impossible. It is a serious step to take, but it can provide relief for an underperforming gut.

How does your condition affect your blood chemistry? Do you need to get regular screenings to make sure all your organs are functioning acceptably?

Trapped_Ghost_Singin3 karma

Yes, before I got my gj tube I was on TPN for several months. Unfortunately my PICC lines got infected and I am no longer a candidate to have one, so TPN is off the table. MY doctors also tell me that TPN is really bad for your liver long term and that gj feeds are a much less damaging solution. Yes, I have routine bloodwork to check things out about twice a year

AaronUFOs9 karma

Are you a boy or a girl?

Trapped_Ghost_Singin16 karma

Girl :)

teidou9 karma

Thank you for doing this AMA.

Have you had any problems with excessive bleeding?

One of my colleagues found that poisoning mitochondria impairs platelets function - I am curious whether there is a tendency to bleed when you have partial function.

Trapped_Ghost_Singin11 karma

Yes, I have a blood disorder called Delta-Graunnal Storage Pool deficiency, which as I understand it is a type of von willebrand disease. I have also sorts of issues with my menstruation, nose bleeds, and GI bleeding.

SoHereIAm853 karma

You have the delta granule storage pool deficiency too? It seems Teidou is correct about it being related to the mitochondrial myopathy. How interesting! I always thought it was just another random thing.

Trapped_Ghost_Singin3 karma

Yea me too. That is super interesting.

Whipping_Tom8 karma

Do you want us to start a ice bucket challenge for your disease? Im game if you are!

Trapped_Ghost_Singin19 karma

That would be great! The ice bucket challenge was a stroke of genius on the ALS foundations part. Although, it would be very unwise to ask most people with mito to dump ice cold water on their heads because many of us, myself included have a very difficult time regulating our body temperatures. My normal body temp is 96.6 degrees F

kitty-cat-meow7 karma

Hi there! Thanks for doing this AMA.

I have worked in the past on a paediatric hospital's general surgery unit as an RN. Often we had babies and kids seen for GI problems and will either get an NG (short term) or a G or J tube. I was wondering about feelings of hunger/satiation before/after tube feeds. From my understanding you aren't solely reliant on J tubes (sorry if I misunderstood!) but after you tube feed do you feel 'full'? I ask this because the J tube bypasses the stomach and without that stretching of a full stomach, can you feel 'full' just based on the familiarity/anticipation of a tube feed? Sorry if this seems like a dumb question, a lot of my kids are either young or non verbal and I've always wondered this!

Good luck with everything, I hope we find a cure one day!

Trapped_Ghost_Singin5 karma

I do normally eat by mouth, but there are times where I cannot keep anything down and rely solely on the tube for nutrition. I constantly feel hungry during these times, because there is nothing going into your stomach. If you are on the tube long enough, the hunger goes away a little bit, the same if you fast for any real long period of time. But every once in awhile it peaks up again and you are starving again.

Indydegrees26 karma

How does the disease affect your daily life? (food, relationships, work etc)

Trapped_Ghost_Singin33 karma

I hate food lol. I never know when it's gonna make me feel sick, but if I don't eat I will feel much sicker. I am able to work part time about 18 hours a week. When I first graduated college, I worked 24 hrs a week, but that became too much and I landed myself in the hospital. I will never be able to work full time. Relationship wise, I have good friends and family that are very supportive. Romantic relationships are tough just because of the energy necessary to keep up with them. And I'm not the easiest girlfriend to have, but I have hope that eventually I will find a guy who can handle me and my lovely personality will win him over lol.

Cristal13376 karma

I (26m) also have a rare congenital myopathy. However, it is progressing so slowly that the doctors tell me I'm currently stable. Probably because I try to live an active life. Across the world, there are only a hand full of people who display the same symptoms, so an actual diagnose cannot be made.

I think you are amazing for having a job. I tried it, but I couldn't handle it. Having little energy sucks, you get home from work and only vegetate. When I had a job (also social work), I became really depressed, because I couldn't find the energy to socialise. However, things changed. Right now, I spend most of my energy trying to be a good friend to the people around me. What energy I got left, I usually spend on my hobby, foosball. I'm really proud that my team got second place at the regional summer competition. Even more so, because I'm one of their strongest players :D

What are your future plans? For me it's very simple. Apart from becoming better at foosball, I want to find a beautiful wife, who accepts me for who I am and wants to build a future together with me. Maybe have children too. Hope to hear from you :)

Trapped_Ghost_Singin5 karma

Ah! It's so cool that you are also a social worker! I'm a bit of an introvert, so I don't feel the need to socialize too much. I hang out with friends a couple of times a month, and I'm good with that. But I can definitely see how hard that would be for someone who is an extravert. It's great that your spending your energy on your friends, its a great place to put your limited energy.

My future plans right now are pretty similar to yours, minus the foosball. I too would like to find a loving partner who is accepting of my shortcomings. Children aren't on the tale for unfortunately. A silly goal of mine I would like to get through the GoT books within maybe a year or so, which is quite a task considering how long the series is.

eraser-dust6 karma

As someone with undiagnosed autoimmune issues, sometimes I feel like I have something more severe. I have gastroparesis and a bunch of digestive issues and tons of food intolerances/sensitivities. I've been able to get my nausea under control for the most part but I still have bad days and end up taking a lot of zofran/dramamine. I get achey easily, sometimes to the point of being confined to bed because I can't move. I know I don't have mitochondrial disease but I think on some level I can relate.

Not sure if this has been asked or not, but what do you have to do on the really bad days? Do you have any medications or therapies you can use that will help with the discomfort?

Trapped_Ghost_Singin4 karma

Really bad days, I barely get out of bed. I usually take something to sleep through the really bad days. I have some meds I use in case of extreme illness, but if I'm bad enough that I can't even get out of bed, it's time to get me to the hospital.

InsecurelyEvil6 karma

What medications are you on and what are they designed to treat? And of course how helpful are they?

Trapped_Ghost_Singin13 karma

I am on a medication for every year old I am, plus one lol. So I'm not going to list them all. They are designed to combat my different symptoms such as pain and my stomach issues. Most of the medication I take is to deal with the stomach problems. And I'm on the classic mito cocktail of vitamins, supplements, antioxidants. I take creatine powder, Co-Q-10, vitamin B12 and levo-carnitine, which all help to increase ATP production (which is what the mitochondrial make). They are somewhat helpful, some meds work better than others at relieving symptoms. I think creatine works the best to give me energy. When I first started taking I felt an immediate difference.

heiferly5 karma

Do you hate the way levocarnitine smells like dead, rotting fish? We crush mine and put it through my J tube, and it has permanently stinkified all of my pill crushers. :-( I've heard that babies with mito sometimes exude the Carnitor smell out their pores because the doses are so high compared to their small size, so I guess I should just be glad my mito didn't kick in fully until later in life, but ugh, I hate that smell!!

Trapped_Ghost_Singin4 karma

You know what, I've been on carnitor so long it's never bothered me, but now that you mention it, it does smell like that!

Cheesewithmold6 karma

Do you find that things such as energy drinks work? Or do they not make a difference at all?

Trapped_Ghost_Singin12 karma

I cannot drink energy drinks. I have found that if I drink one can of soda in the morning around 10 am it can keep me up until the next morning. This is due to the fact that my stomach moves so slowly, it's like a constantly IV drip of caffeine into my system. While this may sound useful, it is actually very damaging to my body to not be able to sleep for that long.

Funnybeaner6 karma


Trapped_Ghost_Singin11 karma

The best advice I can give your brother is to tell him not to fight what his body is telling him. Example: I often find my myself falling asleep at 6 pm in the evening. As much as it's a pain to be in bed by 6pm when I have other things want to do, I have learned that I need to listen to my body. I don't know the specifics of his disease, but if he ever needs someone to talk to you, you guys can always PM me.

shylowheniwasyoung6 karma

I have an adult friend with this disease who has major vision problems and is constantly on steroids. Do you suffer any issues with vision? What types of medications can you use to control the symptoms?

Trapped_Ghost_Singin6 karma

I am very fortunate that I do not have any problems with my vision, but it is very common for people with mitochondrial disease

neptuneagent5 karma

First of all, you are amazing! and thank you for doing this AMA! There are so many things I would like to ask, I'm sorry if the questions seem to be out of order what did you feel when you was first diagnosed with it? When you have headache and migraine, will those headache medicines actually help? Also, you said that it will only get worse with time, what do you mean by that? What kind of condition is 'worse'? Thank you so much, you really are an inspiration!

Trapped_Ghost_Singin9 karma

This will sound odd, but I was relieved. It was great to finally have a diagnosis to hang my hat on. I had gone 18 years without a real answer on what was causing me to be sick. I had seen doctor after doctor, most of them world renown in their field who had been unable to give myself and my family answers for so many years.

Nothing touches my migraine headaches pain wise. Because the pain is caused by something so deep in the cell that nothing can relieve it. Sometimes sleep helps though.

My condition can worsen in the way of loss of muscle coordination, muscle weakness, worsening pain, there is a chance I could go deaf or blind, my heart muscle can weaken and cause all sorts of other problems. Right now, I am able to walk and get around, but that may change in the future.

watchtheearth5 karma

Hey, strong citizen-soldier hybrid. I just want to say that I really hate that anybody has to go through this. I want to say it is really painful for me to imagine your pain, but I can't because I don't know that pain.

I do have narcolepsy pretty darn bad, so I have that going for me, though! We're not that different, right? :D Wrong; because alas, I thought I had it bad... and then I read this.

If I could alleviate your pain, I would. I really, really would. I am so sorry.

Your story to my life is like a fire, meeting another fire (because, you know, fires make fires, stronger right?)... I just wish I could make you, the spark, stronger.

I saw you mention that you look around and hate some people for being healthy. That is justified so easily. Your struggles are the reason why I believe so strongly in those with able bodies working and making those bodies stronger. You have to struggle to live, while there are so many able bodies not making use of the abilities that they were blessed with. If you have to struggle, I will struggle with you! I will forever keep your story in my heart, and use it to justify living and working out.

Meanwhile, I want you and your heart to be as pain-free as possible. It's too bad I can't do that. But I will pray and be here for moral support if you need it. Keep fighting you soldier-citizen hybrid-thing

Trapped_Ghost_Singin3 karma

Awe thank you, your kind words are so sweet and inspirational to me. I'm glad that I have been able to make your fire brighter, and you genuinely put a smile to my face, and thus have made my spark brighter by writing this.

johndhackensacker4 karma

Do you feel like you are now living inside a life-affirming movie about finding love, embracing impermanence and letting it all go, or is the whole experience just random and annoying?

Trapped_Ghost_Singin4 karma

More just random and annoying

fdghd4 karma

If I were you, I would do a ton of research on mitochondria.

3 things you could try, which have been proven to increase mitochondria: start doing tons of endurance exercise. I'm talking, 2 hours on an eliptical per day. Endurance exercise substantially increases mitochondria number and efficiency. (its called "mitochondrial biogenesis") http://livehealthy.chron.com/happens-mitochondria-during-aerobic-exercise-5350.html

2: Do a ketogenic diet. This means consuming nothing but fats. Its also been proven to increase mitochondria. http://circres.ahajournals.org/content/110/8/1047.full this article actually specifically states that a ketogenic diet significantly helped rats with mitochondrial diseases (link takes like 45 seconds to load for some reason)

3: take certain supplements like PQQ (proven to increase mitochondrial biogenesis) and resveratrol. The typical dose of PQQ is 20 mg/day but if I were you I would take like 200 mg per day.

These interventions may not "cure" you of the disease, but if you did all of them, I think they could very substantially impact it and bring you to nearly normal. The fact that the disease can be a result of environmental triggers, indicates it is not 100% genetic, and therefore you can influence it.

Have you tried any of these interventions?

Trapped_Ghost_Singin6 karma

Thank you for the advice. I do my best to do cardio, I have an eliptical type machine at home I use when I can, but I really do not have the energy to work out that much in a day. I do about 20 minutes about 3 times a week, and that's all I can physically manage. A keto diet is out of the question for as, I cannot digest fats very well at all. They make me ridiculously ill.

But I will definitely look into PQQ and resveratrol. I had not heard of these before. Thanks!

Indydegrees24 karma

Can you work a regular job or do any physical activities?

Trapped_Ghost_Singin17 karma

I work part time as a social worker. I can only work about 18 hrs a week. I've tried more and I have been unable to sustain it for any substantial length of time without out ending up in the hospital. I am currently in the process of appealing for SSI, which I have been denied twice because the government hasn't caught up to the medical knowledge yet. Mito isn't on their official list of approved illnesses

partyhat7 karma

Any chance you have a diagnosis of chronic intestinal pseudoobstruction? Or symptoms of it, and could get your GI to give you an official diagnosis? It's basically gastroparesis of the small intestine. I know a lot of people with mito have it, and SSI just changed the rules so that if you have CIPO you're automatically approved.

Trapped_Ghost_Singin4 karma

Yes, actually, I do!

FrostyFett3 karma

I am glad that you are turning something like this positive by using it to raise awareness. I assume having this means you are unable to do any sorts of sports. Do you still watch sports and if so what is your favorite sport?

Trapped_Ghost_Singin7 karma

I don't play sports, I danced for a few years when I was younger, but I had to stop that because I was getting too worn out by it. I'm not a big sports fan in general. I used to be in marching band in high school, so I liked going to the football games with my friends.

cyrilponamperuma3 karma

What do you dream about for 10-12 hours?

Also, I just want you to know that I did university research with next generation sequencing of mtDNA last spring, and a lot of the papers I did were related to diseases and the advancement that sequencing has brought to treatment. We have been having trouble with funding, but next semester I am hoping to start a project relating MtDNA heteroplasmy to degenerative diseases. There is research out there that needs support, so thank you for this AMA!

Trapped_Ghost_Singin3 karma

Boats. I dream of lots and lots of boats. I usally feel nauseous when I sleep so my brain comes up with a reason for it, and the reason is always, boats.

Thank you for all the research you and the community are doing, I really appreciate it!

LibrtyUniversity3 karma

For those who can't donate, or have donated and want to do more, do you have any advice for how we can help raise awareness/help you and others dealing with this disease?

Thanks, and I wish you the best of luck. I didn't know anywhere as much as I should have about Mitochondrial Disease.

Trapped_Ghost_Singin6 karma

That's a great question. I think just talking about what you've read here today with other people will be beneficial. Mito is really not well known and just talking about it with others helps. There is a whole organization called Mito Action that is dedicated to spreading awareness of the disease. They have some really great tips on easy ways to spread awareness.

This is there site: http://www.mitoaction.org/what-can-i-do

cabeez3 karma

Hi! I'd first just like to say keep up at it, and you're very courageous for baring yourself and answering these questions for Mitochondrial Disease awareness.

Do you ever get existential regarding your disease? Or how do you go about answering your whys and hows about it

Trapped_Ghost_Singin10 karma

Oh yes, when I first began to really get sick in high school I had an existential crisis for sure. But I was able to move through it, and I have found that my new life philosophy serves me well. I know a lot of people take comfort in the idea that everything happens for a reason.I don't really believe that and I take comfort in the chaos. Sometimes things like this just happen and there is no particular reason for it. It's not personal, you weren't singled out. Shit just happens, to everyone. I'm a big fan using what's happened to me to springboard my own personal meaning. There is no one real reason I have mito that the universe decided on, but I have the ability to make it meaningful to me.

challengerballsdeep3 karma

Thanks for the ama. Just wondering what kind of doctors have you seen or are you managed by?

Trapped_Ghost_Singin7 karma

I see a bunch of different specialists. My mito is followed by my neurologist. My GI issues are dealt with by my GI doc. I have a cardiologist who keeps a close eye on me, I have a geneticist who is working to figure out the exact nature of my mito, and I have an endocrinologist that helps out my neurologist.

Frostiken3 karma

So this might be a little morbid, but what's your plan for the 'end game', when the pain gets to be too much?

Trapped_Ghost_Singin9 karma

I haven't really thought about that too much to be honest. I don't think I have to worry about that for a little while. I'm pretty stable at the moment. Well, as stable as I can ever be.

Twelve20two3 karma

How has this condition affected you psychologically? You seem like you're fighting on, which is great to hear.

I've had thoughts of suicide and depression due to anxiety, but my reasons seem shallow compared to somebody going through what you are. You're definitely stronger than I am.

Trapped_Ghost_Singin8 karma

Hey, anxiety and depression are just as much of an illness as what I'm going through is. But just like it's important to seek medical treatment when you're sick, it's important to seek help when your struggling emotionally and psychologically. I have my moments when I have trouble coping, but I used to see a therapist on campus who was really very helpful. I hope that you are seeing someone for your anxiety, and if you need to talk you can always message me. Hang in there buddy.

Broshockaa3 karma

Thanks for doing an AMA and I am sorry that you have to go through this; must suck :( Given that your condition leaves you weak and tired, what are some things that you do for fun?

Trapped_Ghost_Singin17 karma

I like to read a lot, I like to watch TV and go to the movies. I used to do archery, but lately I've been too tired. I go out shopping with my mom when I'm not too tired.

rockmediabeeetus5 karma

What are your favorite books?

Trapped_Ghost_Singin7 karma

Oh I love anything by Anne Rice. Right now I'm reading the GoT series.

icouldhavehaditall2 karma

I really want to congratulate you for having such a good attitude despite your condition.

And, because it's an AMA, Top 5 movies?

Trapped_Ghost_Singin2 karma

I'm sorry I replied to your comment so late, but I had to really think about this answer

  1. Mirror Mask
  2. A beautiful mind
  3. Dogma
  4. Rent the musical
  5. Sweeney Todd

chrono142 karma

Are there things that make you feel better and relive symptoms? Like certain exercises, or diet or medicine?

Trapped_Ghost_Singin2 karma

Sleep helps a lot. I'm on some medications that help relieve my pain symptoms, I take an antibiotic everyday that helps move along my digestive tract. Creatine powder is the medication I've found to be the most helpful for giving me more energy

david_yarz2 karma

As a diabetic (while very different diseases) i know what its like to have a disease that affects everything that you do on a daily basis. Diabetes is more nationally known. I have never heard of this disease and am very surpised by and am so sorry for this. But i do have some questions for you

Do you know the chance of someone developing this disease?

What's the expected life-span of someone with this disease?

Do you blame your parents for this? Are they supportive of you?

Are you planning to have children of your own even though this disease could pass to them potentially?

Trapped_Ghost_Singin3 karma

The disease is rare, and developing it in adulthood is even rarer, though I do not know the stats off the top of my head. It is mostly considered a childhood illness.

Everyone with mito is affected differently which makes it difficult to pin down life expectancies. For children who have severe mitochondrial disease most don't live to see their teen years.

I do not blame my parents at all. I am the youngest of four and the only one who has the illness. My doctors believe that it was a spontaneous mutation that occurred. My parents had no idea I would be sick. And my parents are great and very supportive.

I do not plan on having an children

addcream2 karma

some scientists speculate there is a relationship between autism and mitochondrial disease (not that if you have mito, you then have autism, but if you have autism you MIGHT also have mito). do you have any thoughts about this?

Trapped_Ghost_Singin3 karma

Yes, it is believed that autism and mito a related. I personally do not have autism, but I know others with mito who do. I did have some learning disabilities how ever growing up, mostly in math.

thatguy90122 karma

Does caffeine help keep your energy up in the short term?

Also, where did you get your username from?

AyoGeo5 karma

Im OP's brother. Its an Armor for Sleep reference!

Trapped_Ghost_Singin6 karma

I found you! This is actually my brother

tan972 karma

What was the best day of your life? What was the worst day of your life?

Trapped_Ghost_Singin4 karma

Best day, graduating from college summa cum laude. Worst day, my father's funeral

Fishermansterminal1 karma

Do non processed foods help? Or it doesn't matter how raw and organic the food is?

Trapped_Ghost_Singin5 karma

I have not really found that organic versus non-organic makes much of a difference.

c0ugh1 karma

What's your quality of life like? You were diagnosed at 18 but had symptoms from way back, can you rememver a time when you didn't have to deal with these things? Thanks.

Trapped_Ghost_Singin2 karma

I wouldn't say my quality of life is terrible. But I have a mild form of this illness. Yes there were times in my life where I was much healthier. I would say that my early life from about birth to 4 or 5 were rocky. But then I stabilized for a long time. I was always tired, I always was throwing up, and had some muscle weakness and I was always fighting off some cold or bronchitis or whatever but I didn't have the same severeness of the symptoms. It started to get really bad my junior year of high school. But my sophomore year was awesome and I had tons of fun (admittedly too much fun, as they believe overextending myself in sophomore was likely what caused my severe crash)

BrownFat1 karma

For the sake of asking a question, what is your favorite food and which food gave you the best energy-burst you've ever felt? (I really have no questions, I just wanna thank you for stepping up and letting us know of your condition. If it weren't for you, I would not have known about the disease. )

Trapped_Ghost_Singin2 karma

Popcorn. But my digestive system hates it, and I almost always throw up after eating it. As to what food given me the most energy, probably pasta or cereal. Cereal is my big go to when I need more energy.

swaggyswagswagswag1 karma

Thanks for doing this AMA! I've never actually asked a question here before so sorry if it sucks. Anywho, who do you admire the most? And what motivates you to get up everyday?

Trapped_Ghost_Singin4 karma

I admire my mom, which I know sounds cheesy, but really she's been with me through it all, and has always been so strong for me. In addition to mito, my home life has been difficult through the last few years, I lost my dad to leukemia about two years ago. And she's handled that with so much strength and grace that I can't help but admire her for it.

What motivates me? What motivates anyone? I want to live my life to the fullest extent that I can while I can. I don't let my illness hold me back from my biggest goals and dreams.

Indydegrees21 karma

Does the disease cause weight loss or gain?

Trapped_Ghost_Singin2 karma

Everyone's mitochondrial disease effects them differently. In my case, I've had significant weight loss and gain and different times in my life. I know it's odd.

VonPursey1 karma

Does physiotherapy or muscle training make up a large part of your regimen?

A lady I know spontaneously developed this condition some years ago, around middle age. Now some days she can't get out of bed, others she's fine albeit with very limited activity. She's constantly in physiotherapy to try and maintain muscle strength and needs crazy amounts of sleep to function. It's a very strange disorder and one that I had never heard about prior to meeting her. Thanks for helping raise awareness, hopefully we'll see improved treatment in the future.

Trapped_Ghost_Singin4 karma

When I was younger I used to be in physically therapy constantly. I try to do cardio when I have the energy for short periods of time, but even that is a struggle. I also swim when I can in the summer. I like swimming the best because it's a good work out and it's low impact

aliasname1 karma

Would you rather fight a hundred duck sized horses or one horse sized duck?

Trapped_Ghost_Singin3 karma

Definitely horse sized duck

kingphysics0 karma

Sorry if this sounds a little rude but do you have some sort of time left to live? Is it uncertain? Is your disorder mild or severe? Does the severe one cause death?

Trapped_Ghost_Singin1 karma

It's uncertain. I have no real time line, so for now I act like I'm going to have a normal lifespan. My condition is relatively mild. Most young people with severe mitochondrial disease don't live to see their teens.

tess17100 karma

Do you think you'll still be alive when they find a cure? Or, do you think a medicine or cure can exist?

Trapped_Ghost_Singin2 karma

I think that they will definitely be able to find better treatments in the future for mito. Right now the only thing the doctors are able to do is throw vitamins, supplements and antioxidants that are supposed to improve mitochondrial functioning at us. Which help, but it's really not enough. They are finding that mitochondria play a key roll in all sorts of diseases now. I think that if more money is put into this kind of research there is at least a better possibility of finding treatments. I think a total cure is unlikely, but I'd be happy with better treatment options