New to Mito diseases

[Guest guest]

Welcome Pat!

Sorry you have to be here but its a good place to be considering the circumstances. I am actually encouraged to see a 15 year old newly diagnosed. How long has your daughter been symptomatic? We dont' have too many teenagers on the list but many of them have been sick for a long time. Glad you found a doctor who is thinking outside the box of fibromyalgia and willing to keep looking.

deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/

[Guest guest]

My 15 year old daughter has just recently been diagnosed with a

Mitochondrial Cytopathy. She had a muscle biopsy, part of the test

showed a mitochondiral disorder, part didn't. They are calling it a

working diagnosis. She has been sick for several years now. She was

a pretty healthy kid until she was 8. She got Mono and never seemed

to come back 100% from that. She started with pain, muscle pain,

joint pain, bone pain (as she describes it). She was diagnosed with

Fibromyalgia. We also found out in this same time that her thyroid

was not working. They started her on medicine for that. She had

numbness and tingling in her arms and legs. She has had tremors.

She has had muscle weakness. She started have reoccuring infections,

some putting her in the hospital. She has had Mono again and the

second time it was harder on her. She has been through test after

test and so many of them come up normal. The working diagnosis is a

Complex I mitochondrial Cytopathy. She is responding to the

treatments they started. They started her on CoQ10, Carnitor, and B2.

Has anyone out there had similar experiences with these types of

symptoms? We are new to this and any information would be helpful.

Pat

[Guest guest]

Hi Pat welcome to the mito group !

we are happy to see you here , it is a difficult thing to deal with and this is the place to be. My son is 2 and has been diagnosed with leighs disease and let me tell you the moms and dads out here have been a great help .you couldn't ask for a better group of people who will become your friends they are a great life support when you are feeling down. Good luck and God Bless you jenniepatsparks66 wrote:

My 15 year old daughter has just recently been diagnosed with a Mitochondrial Cytopathy. She had a muscle biopsy, part of the test showed a mitochondiral disorder, part didn't. They are calling it a working diagnosis. She has been sick for several years now. She was a pretty healthy kid until she was 8. She got Mono and never seemed to come back 100% from that. She started with pain, muscle pain, joint pain, bone pain (as she describes it). She was diagnosed with Fibromyalgia. We also found out in this same time that her thyroid was not working. They started her on medicine for that. She had numbness and tingling in her arms and legs. She has had tremors. She has had muscle weakness. She started have reoccuring infections, some putting her in the hospital. She

has had Mono again and the second time it was harder on her. She has been through test after test and so many of them come up normal. The working diagnosis is a Complex I mitochondrial Cytopathy. She is responding to the treatments they started. They started her on CoQ10, Carnitor, and B2.Has anyone out there had similar experiences with these types of symptoms? We are new to this and any information would be helpful.PatPlease contact mito-owner with any problems or questions.

[Guest guest]

Pat,

I have a 14 year old daughter who might be able to be a pen pal type person for your daughter who is 15. Kira too has had a very rough time with being able to attend school on a regular basis and we have finally put her out on independent study with homeschooling. So if she is interested, just let me know and I will hook her up with Kira. Kira has Mitochondrial Myopathy- MIDS/cyclic Vomiting /Nurovascular Dystrophy/ Migraines she uses a wheel chair sometimes but then other times is under her own power. She is cognitively age appropriate and frustrated with her weekend bodily state at times. Let us know if you are interested.

HUGS!

O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique

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