New & Scared

Hi first of nall love and hugs to you. It is a rollecoaster road and there are no easy answers. The support from guys here has been fantastic to us since our introduction to Mitochondria a little over a year ago. It has been a difficult journey and we still find ourselves groping in the dark a lot in finding answers and help for our daughter. Often just coming here and typing out my thoughts helps me to keep some perspective. Where abouts do you live? We are in the UK and so far only know two others locally who have mitochondrial issues so it is a lonely road. Once again love and hugs to you

Hi, Welcome to the forum! I'm sorry that your family is on this hard road. I can completely understand how you might feel blindsided by this diagnosis. The first couple months I had a diagnosis I had to let myself grieve. However, the good news is that you now know what your son has. While there currently isn't a cure for mito there are lots of little things that can be done to help those of us with mito feel better. I've learned a ton from others on this site. Hang in there!

Welcome to the forum Sms. I've been diagnosed since June of 2005, and I'm still scared, hang in there, Lots of support here....God Bless.. Lori:)

Hi - new to this forum and don't know how to start. Have been looking for a place online to communicate with other people diagnosed with mito disorders. So thankful to find it, put in a quest on Facebook and got this website. In April 2009 my daughter had severe 4 hour seizure. They put her in coma. When drugs withdrawn, she did not wake up for 3 days-suffered brain damage, memory loss. Went thru rehab. Was recognized by a foreign doctor as genetic disorder. Took months to find out what-MELAS one of the mito diseases. She can no longer work. Now it's found in many in the family-we've all had mysterious symptoms. Me, son daugher, her 2 boys, sister, niece others suspect but not yet tested. I've felt lost, alone, so glad to find a forum where I can connect with others for support. Daughter not doing well, I now help daily to raise her 2 boys who have their own set of symptoms. Will keep looking on here, also want to help others who need someone to talk to with mito diseases. Carol

Hi Carol! Welcome to the forum. I don't know how you feel, but in your shoes I would be feeling rather overwhelmed. It was hard for me when I got sick and then eventually diagnosed and I am the only one (that we know of) in my family who has mito. I am glad you have found us! If you want a mito group that has more posts there is a yahoo! group called mitoldies. On here we have several people with MELAS. Janice in particular has done a lot of research and had some major breakthroughs on her health. Hang in there!

If Janice is reading this, I would like to know what you have found in your research. I also have MELAS as well as my son. I have done extensive research on the internet and try a variety of things. I am finding that 2 of the biggest triggers are infection and stress. I think for some of us with MELAS just get a really large amount of mutated genes, as in the case of my daughter. If you have any specific recommendations, I would love to hear them. Thanks.

Hi. My husband was diagnosed with MELAS 5 years ago and I am his caregiver. He is truly my miracle man. I'd love to chat with others on this subject.

Mito Complex 4 / Leigh's Syndrome

Anyone else out there with this diagnosis? My 20mo. old son was diagnosed a few months back and we are trying to deal as best we can. Waves of emotion for sure. I would like to talk with/meet others in the same situation.

Anyone in the WA area? We are in Issaquah.  Just curious.

Yes,i'm here. Sorry, the garden called me this past week! O.k. these are the things that i have found to improve my symptoms so far. *L-arginine - preliminary research shows that patients with MELAS have arteries that don't open enough especially at critical times. By opening up the arteries, it is said it may prevent the stroke-like-symptoms. What it has done for me, is taken away the brain fog,taken away the "heavy muscles" feeling. Before it would burn for hours after stirring a batter. My energy level has increased 10 fold. My blood pressure is lowering,( we have stopped my b.p. meds.) and "water wieght" is dropping. My muscles no longer give in on the 8th stair, i can make it to top, no problem. If i do over do it, (a common occurance,LOL)it doesn't hurt for long after and no where near the degree it used to. I have also gotten my color back. It also is supposed to help with the retinitis pigmentosa that is familiar in MELAS. It has taken me back 25 years. I have only been taking it for 3 weeks, but i, my doctor, and everyone who knows me is amazed by it's affects.( My brother who has had 3 stroke-like-symptoms is doing better also) * The Digestive enzymes - In Mito the pancreas doesn't make digestive enzymes, so by replacing them, it took away 27 years of nausea, vommiting, reflux and pain. In the past they would prescribe an antacid, which doesn't help with the "delayed gastric emptying". We need those acids to break down food. * Cod liver oil - Rid chronic constipation that i had since i was 14. ( i am now 46) I started this for a suspected "Fatty oxidation disorder". If i ate a fatty meal, my muscles would ache more, and my urine would smell like ammonia the next day. ( some other markers too) I had 2 metabolic crisis' before my MELAS diagnosis, which is explained in the mito literature as to what happens when your body runs out of glucose for energy and can't metabolize the fat,it starts to break down organs and tissue looking for what it needs to make the process happen. By eating a diet high in fibre, fruit, vegetables whole grains, ect. but low fat, i have avoided this lovely crisis situation. *Electrolytes- by adding electolytes, it helps the kidneys to re-absorp more water. It stopped the "OH NO, I GOTTA GO NOW! symptom.(LOL) * Biotin- it helps to metabolize fats, carbs and protiens. It is in the sick formula i take should a bug or infection arise, but i liked it so well, i take it daily. I do take some other mito cocktail vitamins, but the only perscription meds are something for sleep and my Synthroid. Pain meds for me were either constipating, or affected my breathing. So i am elated that the L-arginine works for alot of the pain for me. ( i still have a pain at the base of my skull?) If i don't take something for sleep, i am a wreck the next day. * The only way to make new mitochondria is to excercise, although this was not something i could do well before,i have always pushed myself to keep up a house despite the pain. * i drink 2 liters of water/day, more in the heat. I know there is more, but i think i have rattled on enough for one e-mail. I hope something in here helps others also! Hugs, Janice

Hi Janice, I've heard that L-arginine is good for MELAS; however, they have never added that to my husband's MELAS cocktail. How much do you take? Thanks, Cheryl