Who Here Has Mito Diagnosis Along With Ans

[Poohbear]

I know there are not many on this site but who here has a confirmed Mitochondrial Diagnosis and how was your case confirmed?

I have blood test and muscle biopsy that confirmed the Mito Diagnosis.

I'm new to the whole Mito stuff and it's pretty overwhelming. I had no trouble reading and understanding all the technical jargon when it comes to autonomic stuff but for the Mito stuff I feel like I need a biochemistry degree! (although I understand the basic concepts).

I keep asking Dr's...."Is the Mito potentially the root cause of a great deal of my medical issues?" Nobody seems to agree...Some Dr's say "it could be" others say, "no, it's just another symptom of some other yet unidentified disease".

I do not have enough of the results back yet to know which specific form of the disease I have.

I'm interested to hear from others what specific form they were diagnosed with to see if there is any correlation among the population of us on this site between the ANS stuff and the Mito.

I read that ANS dysfunction is often a symptom in Mito but my case seems to be very different than what they describe on the Mito site in terms of the ANS stuff; my issues are much more involved than what I read about the ANS stuff on the Mito sites.

Sorry if I'm rambling...I'm just trying to understand the Mito stuff and the connections and see what other people here experienced.

Has anyone here had improvement with the 'mito cocktail', if so, what symptoms has it MOST helped you with?

Thanks,

Poohbear

[juliegee]

Sorry. Pooh, about your new DX. It sounds like you still have a lot to uncover. I've had a few docs mention the mito stuff in conjunction with my son, but we haven't pursued it.

I was wondering if you knew HOW or IF your MCAD related to any of this? (BTW, my son is now also being treated for MCAD.)

I hope other members have more info for you. I know many here have mito issues.

Hugs-

Julie

[Poohbear]

Hi Julie,

If you ever decide to pursue the search with your son let me know and I'll help you navigate those options so you can decide the best approach for him and your family.

I have no clue how the MCAD stuff fits into the Mito picture or if it even does. Nobody is giving me those kinds of answers.

I guess in the moment I'm frustrated because I feel like instead of ever getting to the root cause and finding effective treatments or effective ways to manage things I'm just given more and more diagnosis. With the biggest issues there is no cure and I've not found anything that improves my symptoms enough for me to say my quality of life is any better.

You know what I mean? My fight is for my day-to-day quality of life to be improved and nothing has helped much at all or if I find something that helps one symptom it makes another intolerable. For every question I get answered several more develop. That's when I want to crawl under the covers and just sleep (wish I could actually do that), watch tv, read a good book and just try to escape it all. That works ok for short periods of time until I have to stand up or eat or DO anything.

I know...."this too shall pass" but I would like for some of this to pass with some good days mixed in there!!

[toddm1960]

Hi Pooh I to have a confirmed case of mitochondiral disease, mine was confirmed with muscle byopsy, CSF, and blood tests. You're correct that there isn't as much information out there for "adult" mitochondrial disease, lets hope this changes as they get better at diagnosing it. The information I've found on this, point to the lack of engery as the primary cause for your nervous system problems, in fact most research points to the CNS as the first organ effected by a reduction in ATP. I've found very few neurolgist or geneticist know very much about mito and even less about adult mito. The drugs / vitamins / co-factors I'm on are Leucorvin, Tishcon's ubiguinol (CoQ10), L-Carnitine and Creatine. After one month I haven't seen any change......yet, but it's kind of a catch 22. My mito is causing my dysautomonia which in turn is causing my slow motility which has caused my very bad absorbsion which causes me to not be able to absorb any of the drugs I'm taking to help my mito..... As Glida Radner said........it's always something. I hope you find a doctor that can help you and keep us up to date, the best information I've gotten is from this site.

[Poohbear]

Thanks Toddm1960,

I have been on L-carnitine; I take a liquid prescription form and have noticed a little benefit from it. The rest of the 'mito cocktail' I have not started yet. I am researching which products to buy, where to buy from etc.

I have read that there are compounded liquid forms of the vitamin C so I may go that route with the vitamin C.

I'm trying to struggle through the maze of understanding the technical stuff of mito. I understand the basic concepts but I would like to understand more. Maybe when I get all of my final reports that will lead me to better specific information.

I'm still healing from the biopsy site too. Things are better but healing seems to be very slow.

[Griffin]

I have mito damage and very low energy ratings with poor energy distribution too. I took all the recommended stuff for a couple of years but it made no difference. Well, I mean it made no difference to my energy levels. It may have been good for my cells, but as I couldn't discern any difference, and it cost a lot, and I was sick of swallowing hundreds of supplements every night, I just gave it up. I don't know if mito damage is a symtpom or a cause.

[megan2]

Poohbear, for mito they recommend certain forms of coq10 (brand DOES matter). The ones I found tolerable to swallow (liquid preps taste terrible), are the tischon q-gels. Tischon qgels are very expensive, the place most people order from is epic4health. i found tischon's qgels on swanson vitamins though for much cheaper. i think it's the same thing, and the price difference is quite significant. i take the mega 200 qgels.

I don't have confirmed mito, but quite a few doctors have mentioned it. I am going for testing in March.

To my knowledge, mito causes autonomic nervous system dysfunction. I know a couple others who presented primarily with POTS but their POTS is secondary and due to mito. I have POTS which they think is caused by mito (along with cyclic vomiting syndrome, severe muscle weakness, respiratory problems, etc etc).

[toddm1960]

All CoQ-10 is not created equal, what we need to look for is ubiquinol this form is much more bio available. Most forms you see on stores and is much cheaper is ubiquinone, you wont get the results with this form but works fine for people without problems.

[scarfgirl]

My GP mentioned mitochondrial disease, then I saw it mentioned on this board. Is it something I should bother looking into? Or should I try some CoQ10 and see if it helps any? The diagnoses sounds long, and complicated, and I really don't have the energy for something if I'm not certain I'll get some energy back for the effort.

[megan2]

My GP mentioned mitochondrial disease, then I saw it mentioned on this board. Is it something I should bother looking into? Or should I try some CoQ10 and see if it helps any? The diagnoses sounds long, and complicated, and I really don't have the energy for something if I'm not certain I'll get some energy back for the effort.

Kexia, can I ask what made your doctor mention it? To pursue testing is an individual decision. The doctor who first mentioned mito to me told me not to bother with diagnosis, and prescribed me treatment (prescription l-carntine, Carnitor), and the Tischon coq10 q-gels (ubiquinol like Todd said). The mito cocktail varies from person to person and can be more fine-tuned with more advanced testing, but whether there is much benefit to that depends on the individual case. Then, I didn't know much about mito, and just sort of tossed it aside, and went along with what that doctor said.

For me, as my illness has progressed, more doctors have suggested that I might have mitochondrial disease. Although in the beginning, all my symptoms fit under POTS, they no longer do, and my doctors and I would like some answers as to why I am having so much trouble. Testing is harder now, since you have to stop the supplements before pursuing testing. However, for me, I wasn't ready to undergo an extensive evaluation last year, and I am now. My personality has a lot to do with it. Even now, I'm conflicted, but I am also very sick, so I am hoping for some answers and some help.

I hope I am making some sense. Good luck deciding. It's not an easy decision to make.

[scarfgirl]

I'm really not sure why my GP brought it up. He has a patient that is going through the diagnoses process now and I guess my chart reminded him of that guy? He basically said 'you could have that too' but then kind of dodged any questions I asked him about it like if I should try some of the treatment or get diagnosed myself.

The same doctor also made me cry by stating that I was lonely and that it would only get worse until I made myself get out more. Just right out of the blue. I went from feeling pretty good about myself to feeling like total crap in 15 very confusing seconds.

[toddm1960]

Even if you don't get symptom relief from taking the mito cocktail, doctors advise it slows the progression of the disease. This is the reason to get tested and rule out mitochondrial causes.

As for your doctor.........lets just say I've been to 28 before I knew enough to push for a TTT, then push for mito testing. Fire doctors like that and move on, this is hard enough with doctors that care and will work with us to waste time with ones that won't.