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Mitochondrial Disease


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#1 jaateach

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Posted 17 August 2007 - 02:31 PM

Hi All,

Have not posted in some time. I have some info to share that I think might be usefull. I've been dealing with symptoms of heavy fatigue, joint and muscle pain and a sort of brain fog for about 20 years. You know the story, no one was able to diagnosis me. Then in sept. 06 I end up in the hospital with chest pains. A doctor. listens to my symptoms and says well, not sure which type of autoimmune disease you have but I think your symptoms are vascular in nature. 2 weeks later he diagnosis me with scleroderma. HE began me on verapimal, a vaso-dilator. I responded and was well from sept. thru march. In march I got really sick, too fatigued to get out of bed, the pain in my legs was intense but this time I had muscle weakness that on some days did not allow me to walk. doctor at first is thinking the sclero is getting a bit intense. Not the case.

Enter new disease.

Mitochondrial myopothy. In a nut shell mitochondria exist in each and every cell. they take in oxygen and burn fats and carbs to produce our energy. My mito are shutting down. I am not creating energy efficiently so I produce lots of lactic acid wich is painful and makes me feel sick. I went out to University of California @ Irvine. They are doing cutting edge research. The took some muscle from my shoulder and are doing what they do. No results yet.

My rheumatologist at home tells me that he spoke to dr. from irvine. It seems that the research at irvine is leading them to believe that the mitochondrial disease is responsible for the scleroderma. something about how it effects the collegen production. Anyone who wants a better explanation than I can provide about mito stuff, go to The United Mitochondrial Disease Foundation. Unfortunately there is no treatment, no cure at this time. Chances are good your doctor doesn't know a whole lot about mito stuff. They are just learnming about it.

Anyway, thought it was worth passing along. Be well, Joe

#2 nan

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Posted 17 August 2007 - 03:14 PM

Thanks for sharing that information. I am so sorry that you have been so sick. I hope that they can find a way to alleviate your problems.
Nan

#3 Rachelle

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Posted 17 August 2007 - 05:13 PM

Great information!! Answers would be great for why so many suffer, even though there is no cure or treatment now, they will be closer. Wishing you the best.

#4 jefa

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Posted 17 August 2007 - 11:05 PM

Hi, Joe. Good to see you back again and posting on a very interesting subject. California is a long way to go for answers (weren't you living in Buffalo?), but I am glad to see that you are finding some. Also glad to see that you have found a good rheumatologist who is working with you on the search. I also deal with heavy fatigue, joint pain and brain fog - a life sapping combination. Can't imagine the burden of having the muscles involved, too. Do stay with us and keep us posted on your progress.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 Sweet

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Posted 18 August 2007 - 01:34 PM

Hey Joe this is fascinating!

I'm going to print this out for my rheumatologist so we can discuss it at my next visit.

Thanks again!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 barefut

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Posted 18 August 2007 - 03:15 PM

Thank you for the interesting info Joe. I'm sure you enjoy being an interesting case huh?

If I feel fatigued, I can only imagine how you must feel!

Take care,
Barefut