Hello Everyone

Hi there, My name is Tica. Just found out yesterday I have a mitochondrial disease/dysfunction/they hate me. I thought this diagnosis would answer all my questions, but the more I read about mitochondrial diseases, the more questions I have! I've never really joined an online forum before, sooo, this entire journey will be one huge learning process for me. :))
kris789's picture

kris789

12/13/2011

Hi Tica, This is my first online forum as well. I was disgnosed with mitochondiral disease about a year ago after almost 6 years of trying to figure out what was wrong. To you, and anyone out there, I am searching for some kind of support group. This disease is maddening and almost noone understands. I am 46 with a 15 and 10 year old who have soooo much more energy than I do. Nothing in my area for support groups that I have found thus far. I'm near Syracuse NY but travel to Buffalo for treatment. Welcome and I hope this is a good start for both of us to get more info, support and answers!!!
The Ubiquitous Mr. P's picture

The Ubiquitous Mr. P

12/14/2011

Hi Tica and Kris, what symptoms do you each live with? Mr. P
Syd's picture

Syd

12/15/2011

Welcome Tica and I am pleased you discovered why you have felt so sick. The greatest thing I learned, and this is from Mr. P, is keep your expectations to the lowest level. From my expereince when your expectations are not fulfilled it will cause a mito crash and it takes days to recover. So before going to a doctor or looking for information, I suggest you observe your expectations and try to take them down to the lowest degree you can. It will help you from feeling hopeless and despair which can cause stress to the mitochondria. Relaxation, internal security, being centered, being gentle, serenity, heart, kinship, tenderness, respect, etc are all qualities you will need to fit into your circumstances. Stress, as you know by now, is a killer. Your presence is significant! Syd
Tica's picture

Tica

12/20/2011

Wow! I really appreciate everyone's kind words. It's so nice to be able to talk (type) to people that really understand what I'm going through! When I was finally diagnosed with mitochondrial disease last week, it was the culmination of years and years of countless doctors appts, tests, trial & error prescriptions, and me insisting that everything wasn't "in my head." As strange as it sounds, it was great to finally hear the doctor say, "you were telling us you are exhausted, in pain, etc. and this is why." I also found out that I have a bunch of food sensitivities: gluten, dairy, eggs, chicken, bananas, almonds, and peanuts. I am meeting with a nutritionist next week to figure out what else there is left in the world to eat :)) Due to my GI problems, I already have a bad relationship with food, so this new diet should prove to be an adventure... Now for my abridged list of symptoms: - Migraines and frequent tension headaches - Constant GI problems - Frequent/recurring infections (ears, sinuses, etc.) - Very tender muscles (esp. in shoulders & neck) - Hearing loss (mild), tinnitus, vertigo, balance problems - Dexterity, coordination problems - Reynaud's disease- "hey, look, my toes are changing colors!" - Mental fog, confusion, forgetfulness. Really hard time expressing my thoughts. Simply writing this response has taken me almost half an hour! - Fatigue... like I cannot describe, like I never thought possible before I started getting sick. People used to think I was lazy/anti-social/depressed, but most days taking a shower and getting groceries is enough to make me need a (3 hr.) nap. I know everything could be a lot worse, but it is still pretty tough to be 25, look perfectly healthy on the outside, but feel like I have a 80 year old's body. My doctor feels that I probably have secondary mitochondrial disease and nothing degenerative. After seeing how I do with my new gluten/dairy/taste free diet, then we'll see if I need to become a human pincushion again. Thanks again everyone for allowing me to vent my frustration and for your words of support! Hope everyone has a Happy Hanukah and Merry Christmas!
JeffGus2112's picture

JeffGus2112

01/03/2012

Hi Kris, My name is Jeff. I was just diagnosed with mitochondrial disease. I have a 7, 11 and 20 year old so I understand your energy issues. I see you live in Syracuse and come to Buffalo for treatment. I live in Buffalo and was diagnosed by an infectious disease specialist here. I was wondering who it was that you see here. Being just diagnosed I am looking for the best care possible. As for support groups I believe we have a couple here in the Buffalo are if that would help you.
Tica's picture

Tica

01/03/2012

Wow! I live in the Buffalo area too! I haven't gone to any support groups yet, though. I'm somewhat hesitant to go to a support group meeting as (maybe mistakingly?) I think many are geared towards the parents of children that have mitochondrial disease. Zero energy has been the biggest problem for me too… I can't imagine how you guys with kids get through the day. Jeff, did your doctor start you on a "mitochondrial cocktail" or anything of that sort? I'm still figuring out my way through this also. Good luck!
Tica's picture

Tica

01/05/2012

Just realized that I typed "Wow!" a lot but hardly ever use it in conversation :))
Michael7918's picture

Michael7918

01/06/2012

Hi Tica, I will be starting the Mitochondrial Cocktail next week. I am keeping my fingers crossed that I will receive some benefit from it. After I read your post, it reminded me of exactly my situation. The Fatigue, is the worst part about everything. I went from being a former college athlete and still exercising 5-6 days a week, to absolutely not being able to do anything! Daily routines are a struggle for me. It is very hard to explain to people, because they all say "well, you look great." Fatigue by far has definitely been the most debilitating symptom for myself. I wish you luck and hope that your doctor will soon start you on some treatment. I will post on how my body responds to the Cocktail, going forward. -Mike
Amyjane's picture

Amyjane

01/08/2012

Mike and Tica, The mito cocktail was a lifesaver for me! I can't live without it. I take Carnitor (L-Carnitine), Riboflavin (B2), and Cyto-Q Max (from Solace Nutrition). The Cyto is pure ubiquinol, a form of CoEnzyme Q10. I discovered that my body was not processing meds in pill form, due to allergies to the fillers in the pill. Liquid meds are like my caffeine on sick days. Sometimes i plan my day around my afternoon dose. I can feel the boost. :) I am looking forward to hearing how the cocktail goes. AmyJane
Michael7918's picture

Michael7918

01/27/2012

Hi AmyJane, I actually had to delay starting the Mito Cocktail because my doctor wanted me to get a muscle biopsy first. I had the biopsy done on Jan.23. Needless to say, it's only been a few days since I've started the vitamins! That's great that it has been a success for you thus far and you feel energentic! I can tell you hearing stories like that, will make others feel optimistic. How long did it take you to start feeling the positive affects of the mito cocktail? Just curious? Thanks, Mike
xomissmelxo's picture

xomissmelxo

02/05/2012

Wow! I live outside Syracuse too and had to travel to mass to get answers. I can't start the cocktail until I have a biopsy which everyone is dragging their feet to do. I had an advanced excercise test in which my lactic acid level shot up to six and stayed there for 24 hours before companyj down.
blampl's picture

blampl

06/12/2012

Hello all, I was just diagnosed in Feb. It took me 3 years and 2 different states to get the diagnosis. Like everyone else the fatigue is unbelievable. I have never head problems with depression before, but seem to be experiencing it for the first time. Any one have any coping mechanisms. I started on the mito cocktail about 2 months ago, but not always seeing much improvement. Has anyone else had problems with their vitamin D levels? I have the Miyoshi type of mito. Does anyone know of a support group in the Cincinnati or Dayton area? As someone else said I'm overwhelmed by the diagnosis and what it means, but also I want to be proactive. Any advice will be greatly appreciated.
Charli's picture

Charli

07/06/2012

Omg tica I cld have written ur post on symptoms. I just came across this disease. I've been trying to get answers. ATM my dr thinks its epilepsy, cause I suffer from atypical absence and myoclonic seizures. I'm so frustrated at being exhausted all the time. Normality has become a vague memory. I lost custody of my children because everyone thinks its in my head and I'm lazy. They want to believe its mental health issue. I'm now gonna put the info I've researched to my dr and see if I can't get a diagnoses. Wish me luck. Oh an tica good luck with ur journey also.
Charli's picture

Charli

07/07/2012

How messy is MSG? Grrrr. I've been trying to get answers for over 9 yrs. apologies. For not proof reading.
nancyw's picture

nancyw

03/10/2013

I'm brand new. I was just diagnosed this week and am getting used to the 40 pills per day. The diet thing is proving to be the hard part. I have yet to see the dietitian, but how does one live without complex carbs? I've been told to cut out the complex carbs, but simple are OK. That's counterintuitive. I hope that the dietitian can help. Must I completely cut out the complex carbs or just cut back? That's the sort of thing I need to figure out. In the meantime, steak and veggies it is.

What clinic did you go to?

Nancy W.

nancyw's picture

nancyw

03/10/2013

Hi Michael:

I'm on my third day of the cocktail. I'm waiting for that surge of energy :) I hear it takes a couple of months to improve. My doctor said that it took me a long time to get to him so it will take a long time to fix.

I'm still waiting to find out if it is primary or secondary mito. If it's a sensitivity, maybe I can heal eventually? I can hope for now.

Best wishes.

Nancy W.

nancyw's picture

nancyw

03/10/2013

I'd love to hear about support groups. Are we allowed to post that sort of thing?

Nancy W.