A personal story of life with Mitochondrial Myopathy

[@kbb813]

So glad to see you are reading the Bible. God surely will bless you through this, Patti. Stay close to Him!

[@brendabaum6442]

Thank you for sharing your experiences! Prayers for strength and good days for you!

[@tresinforest2904]

Prayers

[@benbenitez1]

Thank you for sharing your experience Patty!!!😀👌

[@gingervitis93]

I also have mitochondrial myopathy. I can barely walk at 26 and am losing function of my hands.

[@aarshjohal2852]

how’s you doing John?

[@teresaanderson3581]

I walk and eat vegan and 32

[@Nina-gg3rw]

Can you get all over body because I'm feeling pain from prednisone 2005 to 2018 uc

[@petercofrancesco1620]

@@Nina-gg3rw , Same For Me .

[@pash5534]

It’s interesting that you mentioned Lisa if usage with your hands. For the last 4-5 years my hands have been involved daily. They swell, have limited to no usage at these times, much discoloration occurs, can happen day or night as well as involving both hands or one habd. The pain it’s much like a neuropathic pain. My mitochondrial disease physician said it is mini strokes (AKA TIAS) when this occurs.

[@jessicagomez1760]

My sister is 30 and she has recently been diagnosed... I am very worried and scared for her, she went through so many doctors, and struggled so much...

[@teresaanderson3581]

Its all good vegen and walk or pool 32 years old Ga

[@karthiksankarasubramonian9414]

MNGIE? How is she now I have the same condition what is the treatment what is doctor telling

[@pash5534]

Hi there. Thanks for your interest and concern. Less ups than down now. On home Hospice now. It is evident that I’m 10 years out now. I have lots of pain equal now on both sides of my body. Only able to sleep now in an electric recliner. Upon inquiring about donating organs for research upon my death and I’m shocked to discover just today that this has never been brought up before. If we want a cure, I feel we, that have the mitochondrial disease needs to lobby for organ donation upon our death so that others diagnosed in years to come will hopefully have a better chance of having a cure for this very debilitating illness. ​@@karthiksankarasubramonian9414

[@SparkingLife111]

Please tell this lady to try near infrared led therapy. Put it as close to her body and far infrared mat and please see if she gets relief. Its supposed to help mitochondrial function

[@lashawnab.441]

Thank you Patty for all you do to help others and bring awareness. May God bring you comfort and joy.

[@stefs3460]

Mito cocktails still not covered by insurance so far and still facing roadblocks in care many drs still don't even know what it is. I have the genetic kind one of 6 people in my family who have it.

[@myearthhaven]

Patty, is your father an atomic veteran too? I was diagnosed with mitochondrial myopathy last year after decades of worsening symptoms. I'm the first in my family to have it but my father was exposed to fallout in 1956 during the atomic tests in the Marshall Islands.

[@MiaMore.]

Thank you Patti for fighting and being a voice for us!! I am being seen at Columbia University Hospital in NYC and unfortunately, I'm not at all happy with their care at the time!

[@queenofcheap6310]

Thank you Patty for sharing your story. Mito Myopathy is what I have too with no family history at all. I'm in Australia & the specialists here are only researching the genetic form. Talking about 'three parent babies' to stop the gene all together. I am very much like you. It took a long time to go through so many tests, scans, bloods & then it was the muscle biopsy that found out what I had. I was working it a hospital too when I started finding it hard to walk from the carpark into the hospital. I lost half my body weight going down to 44 kilo's. I take Q10 & Magnesium orotate as my 'mito drugs'. I have had it now since 2012. My Nuero isn't overly interesting in helping me but I don't let that stop me. I too go from cane, walker, scooter & electric wheelchair. I went into heart failure in 2019 which was scary so I now have a Pace Maker in. The only new thing of late is my hair is falling out very fast. I haven't heard that that is part of Myopathy or Mito at all so I'm off to my GP (General Practitioner) this coming week. I'm female of 50 yrs old. I do hope you are doing ok at this time. Cheers, Helen.

[@GodisLovetoo]

Fast!

[@justsayingbro101]

Hi Patty I think I am suffering from the same disease. All your symptoms sound like mine. I pray I am wrong and its just my thyroid causeing the muscle weakness. I pray for you I pray they find a cure.

[@kc7339]

I'm recently diagnosed with this disease. But symptoms since 2008.

[@karthiksankarasubramonian9414]

How are you

[@eschonlau3758]

I wish we could find a doctor to test us. My brother and I have different symptoms but he has extreme muscle spasms (enough to look like seizures at the worst point), at time difficulties walking, constant nerve pain, altered sensations, etc. I have left foot drop, extreme fatigue, small muscle spasms twitches, etc. They seem progressive. I’m 21 and he’s 19.

[@lena5633]

Get a primary care doctor to run a basic panel and mri that is the start. Have them check for elevated lactic acid levels