Specialist Basically Told Me I Have Mitochondrial Disease

[trappedat20]

So, my husband called a Mito specialist in Atlanta and he basically said that with my symptoms, previous blood test results, and family history that he would treat it like Mitochondrial Disease regardless of what the tests say and he basically told me that I did have Mito. I knew I did anyways though. He charges 500$ for the appointment not to mention the money it would cost for the blood tests (we just cancelled our health insurance for a long list of reasons but basically it was stupid and wouldn't help us in emergency's anyways) and I don't really see the point in traveling to Atlanta and doing all of that if the treatment will be the same.

I do want an official diagnosis for medical purposes though. Do you think I can get my regular doctor to diagnose me with Mito if I present all of the information to him? He's been pretty understanding in the past and I went up to him with all of my symptoms and told him I though I had dysautonomia my very first visit and he agreed. Do you think I'll be able to get a diagnosis without gene tests or a muscle biopsy?

I also am unsure what to do as far as kids go. I'm turning 21 next month and I've never had kids but I've always wanted 4. I don't know if there's a gene test or something I can do to figure out if I will pass it down to my kids or not. I'm not sure if something like this http://www.courtagen.com/ will provide me with any answers as far as that goes.

I'm not really sure what to expect from here on out. Seems like even if I went to a specialist unless I fit a subtype they wouldn't be able to help me out as far as that goes. There's so many bad things that can happen and I don't know how to know if they will or not.

My husband has made me stop working out (it was making me so much worse) and we're slowly cutting back on everything to try to see which ones make the biggest difference and then we're going to slowly add in the Mito cocktail. I'm thinking of trying that heartrate thing I saw mentioned on this forum about having something that beeps once you hit a certain hr and you have to stop what your doing. I don't know. Please, anyone with any experience with it give me some advice.

Also we're canceling my Vanderbilt trip in February. There's no point paying that outrageous bill and putting myself through those tests when it's more than just the dysautonomia now that's bugging me. I know what's causing the dysautonomia and it seems the mito symptoms are probably more disabling than the dysautonomia symptoms (granted I don't know what is the mito and what is the dysautonomia.)

I guess my game plan is to take the Mito cocktail, slow my life down even more and stop myself from doing anything physically demanding, and rest a lot more. Also get some genetic tests to figure out what will happen as far as kids go. Anything else you guys think I should do? The mito forum is so empty and hasn't been active in a year so there is no point going there.

[sue1234]

I don't know anything about mito disorders, but I'm just guessing that to get a diagnosis, a biopsy would probably be needed.

The only thing I've read recently is there are actually sometimes root issues that can cause mito disorders to be a secondary problem. I am assuming if the root problem can be fixed, then the mito issues improve.

Good luck!

[trappedat20]

Oh gosh. I hope not. As much as I hate Mitochondrial Disease I hate finding out I have something but that it's caused by something else and it's like a long neverending chain of diagnoses I have to search for for the rest of my life. I don't think that's the problem in my case though.

[IceLizard]

Hi MakeMeErised,

You are right to weigh the pros and cons of extensive testing, especially when the tests are not definitive anyway. From what I have read, the best they can do with some people is basically diagnose "probable" mitochondrial disease and then treat it as such.

But, if the problems you are having are NOT the result of mitochondrial disease, then testing may be more conclusive. Have you ruled out other causes of dysautonomia that could be causing your problems (turning blue, ect.)?

Have you tried looking for healthcare at healthcare.gov? If your income is low enough your health insurance is subsidized, so you won't have to pay the full cost.

[trappedat20]

We originally had health insurance with them but dropped it because the monthly payment was already high and it would have been a 9000$ deductible and it only covered 20% after that and there were a lot of things it didn't cover so there was no point. There wasn't anything better either because we can't afford more than 250 a month right now for health insurance.

Yeah, I've had 2 doctors now tell me that it def seems like my mitochondria and to start treating it. I don't see the point in expensive and invasive tests that aren't even going to change the course of my treatment. I'd like to get more blood tests done and figure out some more deficiency's and stuff so I know more of what vitamins to add and I'd like to eventually get genetic testing done for the purpose of knowing if I will pass it on to my kids but besides that I don't see the point.

I've gone down the list of all of the causes of dysautonomia and the only thing that makes sense is Mito. Literally everything makes sense for Mito. Even my elevated liver enzymes in the hospital that made no sense initially. How I felt growing up, what was going on around the time I got sick, my symptoms, what blood tests came back abnormal, what things help me feel better, what things make me feel worse, my family history ect. Everything leads to Mitochondrial Disease. It explains everything and is the only thing that even makes sense.