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How old were you??

How old were you when you first experienced symptoms, and have they been progressing or improving?

Up until I was 38 years old, I was a horse.  I could work all day, eat a quick meal, and play volleyball until 11PM.  I could skip meals and not even notice. 

I was about 38 when I noticed the first symptoms:  exercise intolerance, mental fatigue and overall poor energy.  I was 42 when the symptoms became profound enough that I was missing work, and not just workouts.  Now I am 46 and about to go on disability.  30 minutes of light activity wipes me out and I have the attention span of a goldfish.

One feature of this disease that really blows my mind is how is it possible that my mitochodria are running like tops for 35 years, then start to fall apart.  Is my experience unusual?

Thanks.

-Rob

 

kbdvm51's picture

kbdvm51

02/15/2011

I don't think that you are that unusual for an adult onset patient. I am even older than you. My symptoms have been slowly progressing. I am helped somewhat by Lyrica as fas as my pain, but I have cut back on my exercising quite a bit. Not that I was an exercise fanatic by any means. After developing paroxysmal atrial fibrillation in mid 2007 I decided to get healthy and started exercising, eating better and losing weight. I had worked my way up to spending 45 minutes on the elliptical at the gym 5-7 times a week. After about 1.5 years I had lost about 40 pounds but didn't seem to be gaining any strength despite exercising. I slowly began noticing vague muscle aching which progressed to more intense pain including stinging and burning sensations in my legs. It took about 2 years to get to a diagnosis of mitochondrial myopathy and during that time I kept exercising even though my energy level kept falling and the pain kept increasing. It didn't even occur to me that exercising could be hurtful. 

My muscle symptoms began at the age of 57 and I would say that they have been gradually and slowly getting worse over the last 2-3 years. My brain function has improved a bit in that time I think because I finally convinced my doctors that it would be okay to stop the beta blockers that they put me on to manage my atrial fibrillation. 

One of the going theories about adult onset mitochondrial disease is that the proportion of bad mitochondria to good changes over time and that once the bad start to predominate you start to have symptoms. My personal theory is that by exercising I actually precipitated my crisis since exercise causes mitochondria to divide and by that mechanism I increased the bad over the good. 

I am still working full time, but I m not sure how much longer I will be able to keep up the pace. 

Hope it helps to know that you are not alone. 

 

Siobhan's picture

Siobhan

03/07/2011

Hi Rob,  No your not on your own.   My mito kicked in aged 40...........did not even have a regular GP as until then I was healthy and did not need one......oh how that has changed, I had a car accident aged 40 and broke my C1 and recovery was difficult.....to cut a long story short my body seemed to fall apart from accident and the whole trauma and ONE of the many difficulties I was having  was my eyes, they just stopped working properly and the eye specialist I was attending to try and get them back on track could not figure out why they were not responding to his treatment.........thank god for him as if it was not for him I would still not be diagnosed I would say as the neurologist I was attending because of balance issues told me I was wasting my time getting muscle biopsy done as there was no way I had Mito and if I lost some weight (he went as far as to give me the exact amount of weight) that I would not know myself!!!!!    Was not carrying weight  before accident but I will leave that  part of the story there before I start swearing :)

Where I am at now is  lots of eye difficulties (CPEO), balance can be a problem, Ptosis, headaches, nausea, sleep apnea, exchaustion exchaustion and more of same, very poor stamina, brain fog, cognitive difficulties, very painful shoulder (which I suspect is connected to Mito in some way) , I know I am missing some symptoms but too tired to think of them....sound familiar?

savedbyHisgrace's picture

savedbyHisgrace

03/08/2011

My Mito kicked in at the age of 35, about 3 weeks after I had my first child.  In the 5 years since then I am still struggling to find a KNOWLEDGEABLE Dr to treat me. I am so stinking frustrated at this point.  Can anyone recommend a dr or hospital.  I've had 2 muscle biopsies done (confirmed Complex 4 mito) and I've been to the Cleveland Clinic (cleveland, OH) to see Dr Cohen (who is no longer there).  I live in the South but travel is not an issue (let's face it, I've made a 9 hour roadtrip with a 3 & 5 year old - nothing scares me!) Currently on a mito cocktail. Any suggestions on finding a dr as my symptoms are progressing quickly.

savedbyHisgrace's picture

savedbyHisgrace

03/08/2011

My Mito kicked in at the age of 35, about 3 weeks after I had my first child.  In the 5 years since then I am still struggling to find a KNOWLEDGEABLE Dr to treat me. I am so stinking frustrated at this point.  Can anyone recommend a dr or hospital.  I've had 2 muscle biopsies done (confirmed Complex 4 mito) and I've been to the Cleveland Clinic (cleveland, OH) to see Dr Cohen (who is no longer there).  I live in the South but travel is not an issue (let's face it, I've made a 9 hour roadtrip with a 3 & 5 year old - nothing scares me!) Currently on a mito cocktail. Any suggestions on finding a dr as my symptoms are progressing quickly.

BostonRob's picture

BostonRob

03/15/2011

Thanks to all for the comments.  To the person living in the Southern U.S. looking for a Dr., are you close to Atlanta?  Have you contacted Dr. Fran Kendall?  Best of luck to you.

eflatley's picture

eflatley

03/16/2011

Hi Rob, I have a similar story to you and the others above....   I was pretty active until my mid thirties, was able to hike, work long hours, etc.  Then, suddenly after the birth of my second child - my body went haywire - seizures, autonomic dysfunction, migraines, stroke like episodes, muscle pain, etc.  It took awhile to figure the whole picture out... but eventually I was dx'd at the Cleveland Clinic through muscle biopsy.  There are other good docs there still besides Cohen ie. Parikh and some others.  For the woman who lives in the south, there are other doctors around, depending on where you live who have experience with diagnosing mito.   I'll post a separate list from MitoAction of Mito-knowledgeable doctors.   Good luck, everyone!   /erin

eflatley's picture

eflatley

03/16/2011

oh well, the spam filter wouldn't let me repost the mitoaction list that mitoaction published and circulates... 

Anyways, here are a few names in the south:-

Fran Kendal in Atlanta Phone: (404) 720-0820  www.virtualmdpractice.com

 

Mary Kay Koenig, MD, Child Neurologist, Houston, Texas, Phone: (832) 325-7151

John Shoffner, http://www.medicalneurogenetics.com/bios.asp  Phone: (678) 225-0222

 


bigallergyfam's picture

bigallergyfam

03/21/2011

Definitely contact Dr. Fran Kendall in Atlanta.  You can sometimes do visits via webcam.  She replies to her patients' emails every day (no charge for that!).

She also can send bloodwork off to the lab that has the newest technology to test 700 of the genes for mito via BLOOD TEST so a muscle biopsy may be avoided altogether--and that gene testing is often covered 100% by insurance companies.

www.virtualmdpractice.com

Our family thanks God for Dr. Kendall.  :)

CrossBC's picture

CrossBC

05/31/2012

Hi Rob, I am 37 and was very healthy prior to bronchitis in Dec. 2011. I was working full time, running every second day, raising 3 children, volunteering, etc. Breathing began to feel difficult, my muscles became very week, "exercise intolerance, extreme fatique plus other symptoms such as numbness on left side, burning sensation on skin, etc. I was off work for a couple of months but am now returning with a graduated schedule. Still feeling pretty lousy but have improved significantly since mid - february 2012 where I was at my worst. Do you mind my asking - what diagnosis you received? I saw a neurologist that told me it's mito disease - but nothing more specific than that. Take care. kar.
LindsyR's picture

LindsyR

04/04/2015

PLEASE LOOK INTO THE FLUORAQUINOLONE ANTIBIOTICS.. THESE ARE ALL SIDE EFFECTS AND THEY CAUSE EXCESSIVE DAMAGE TO MITOCHONDRIA CELLS AND DNA MUTATIONS.. PLEASE JUST CHECK IT OUT BECAUSE ITS THE MOST COMMON ANTIBIOTIC OUT THERE AND IT IS VERY SERIOUS THAT YOU FIND OUT.. PLEASE!! I TOOK A GENERIC LEVAQUIN CALLED LEVOFLOXACIN.. IM STILL SUFFERING A YEAR LATER..

Lindsy Ruma