Hi, my story:

Hi Sarah, Welcome to the forum! Don't you just love the "you must be stressed" catch all? You are very right that while some people with mito have a very invisible disease it is quite visible in others. I'm sort of both. I look healthy most of the time, but I almost always need a powerchair which gives people a clue that maybe I'm not as healthy as I look! It is hard when even for a period of time you have to give up things you really love, but I think sometimes not being able to do things I used to love has made room in my life for new things to really enjoy. Anyway it's nice to "meet" you!

Hi Sarah,

Welcome!

What are you studying at MIT?  My profession is Computer Engineering.

Have you changed to the Mito diet yet of fewer Carbohydrates?  I know this is incredibly tough in college, but it makes a major difference.  I personally try to keep my daily Carbohydrate diet to 80 grams to 150 grams of carbs per day.  If I go over 150 grams of carbs or more than 50 grams in one meal, I get tired, weak, and paralyze.

A pizza slice has a lot of carbohydrates, so until you have your Mito under control, you will want to avoid pizza. 

You might want to look into something like a diabetic diet, but with more protein.  Spreading 5-6 small meals throughout the day will allow your body to have energy available more consistantly. 

My problems with weakness and paralysis attacks became noticeable in college.  I didn't learn about the proper diet until I was mostly through my Masters in Computer Engineering.  Proper diet helped a lot, but I did a lot of damage to myself with improper diet for a long time.

If you need a scooter use one.  Pride goeth before the fall.  If you are going to be an energy intensive situation, make sure you have a wheelchair or scooter available as an assistance tool.

My disabilities were "invisible" for the longest time.  They become blatant each time I fall (which is sadly often).

Sarah,

I’m a 32 yr old w/ mito diagnosed at 13, symptoms since 2 ½ years old.  Its been a life changing disease for me and emotional roller coaster for me.  I would like to connect with mito individuals.

I am visually impaired so I bigger the font at times the better.  I have daily headaches among other things including heat intolerance.

Don’t ever think that you’re the only one going theough mito and that no has any idea how you feel.  Are you the only one in your family that has any type of mito symptoms?  My mom, along with my 30 yr old brother have it.

It can be hard knowing that what you used to be able to do, you can't.  As well as having to depend others for assistance more especially considering I don't derive.

thje last comment was me matt c.

   Hi Sarah,   I really HATE TO SAY THIS, but you sound just like me, my husband really figured  it out  when   I took a cardio  test and my Lactic acid Doubled in less then a minute   When I walk I feel like I Walk like  A Drunk.  I bounce off of walls...Sarah  I thought I was crazy, doctors treated me like a Hyper condriac........I will say a prayer.....God Bless.......Lori  :)

Hi, 

Oh I'm very sorry. I know what a writhing awful feeling it is for you to feel like doctors think you are crazy. I will never forget the first time a doctor said that, there is nothing wrong. I was like, I can't walk anymore, obviously there is something wrong!!! Anyways, I can just tell you to not give up checking it out. I had to see 4 neurologists before the last one suspected mito, and all the others hadn't practically heard of it, or thought it was only in babies, which is not true.

One of my friends said we should get a T Shirt made for me saying I'm not Drunk, which yes, is funny and also quite sad. I'm sorry, I really do know what you mean. At least we each know someone else in the same situation!! Since I am in college and have to do a lot of getting around, I mostly use a wheelchair, since my walking has become worse over the summer. I bounce off walls too :) ! B/c i use them to catch myself before i fall over. 

Well, it is very nice to meet you, although in other circles our introduction may be considered slightly unorthodox. :) please lets keep in touch!

Hi, 

thank you for replying! I am adjusting to all these changes I think. Since june I have found out I do have mitochondrial disease and i have started using a wheelchair since my walking has become worse. I cantgo further than a block maximum anymore, so you're right, the wheelchair is a definite clue for people. 

On the one hand, I am glad that I have found doctors who can figure out what is wrong, and don't have to resort to telling me i'm stressed. on the other hand, if i was stressed, a good vacation in hawaii ought to have done the trick :) given the history, that was never a possibility though. 

Congratulations on your wedding!!! I don't know if this is an odd question, but at 20, I worry that it will be really tough to get married since i have this disease. I wouldn't want a guy who wouldn't date a woman just because she can't walk anyway, but are such guys thin on the ground? If you don't mind my asking, how did you work out this side of life? I feel like I scare people too much to get asked out by anyone, what with the walking and breathing and everything. 

very nice to meet yo as well!!

Hey Matt, 

It is very nice to meet you. I hope you don't mind, I upped the font in case that might be helpful for you. Now I know that I have mito, it is clear that my health stuff was all along due to this, (since age 12) since I used to think I had Lupus or some other autoimmune disease. 

I have also found the past year to be an emotional roller coaster. partly b/c the disease has progressed so much since I first started having walking difficultly, and partly b/c it is sort of a scary thing to hear. I don't know if I am the only one in my family with it, though I am pretty sure my mom has it too. 

please keep in touch, tell me more about yourself. 

I am a third year in college, I study math and physics, so i am doing math pretty much all the time. I like heights and strawberries and swimming across lakes in the rain. 

Hey Matt, 

It is very nice to meet you. I hope you don't mind, I upped the font in case that might be helpful for you. Now I know that I have mito, it is clear that my health stuff was all along due to this, (since age 12) since I used to think I had Lupus or some other autoimmune disease. 

I have also found the past year to be an emotional roller coaster. partly b/c the disease has progressed so much since I first started having walking difficultly, and partly b/c it is sort of a scary thing to hear. I don't know if I am the only one in my family with it, though I am pretty sure my mom has it too. 

please keep in touch, tell me more about yourself. 

I am a third year in college, I study math and physics, so i am doing math pretty much all the time. I like heights and strawberries and swimming across lakes in the rain. 

hi!

i am studying mathematics and physics (right now i am taking additive number theory, abstract algebra, quantum physics 2, and writing a paper in manifold theory)

I will give the diet a go, thank you for the advice. I am usually fairly careful abotu carbs anyway, so hopefully i haven't caused damage. 

as for a wheelchair, i use one on a regular basis. i can't walk as well as i could at the beginning of the summer, and every time i push it too hard i get worse and sometimes stay that way. so you're right, it is not worth it. 

thank you for your advice, it was nice to meet you!