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An_248104 posted:
Im new to the commu ity but not new to fms. I was dx when I was,19 and am now 43. I had many years of feeling good but last few not as good. This week has been bad and sends me into a tailspin worrying . My children have mitochondrial disease which,ales me always wonder is fms what I really have?.
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maggiethedoglover responded:
Hello New,

Welcome to the community. I hope that one of our nurses will respond to you as they are very helpful with such questions. I do not know what mitochondrial disease is. I am sorry that you have to worry, not only about yourself, but your children as well.

I will keep you in my heart.

maggie

Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
 
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annette030 responded:
Mitochondrial disease can be very difficult to manage.

There is really no way for us to know what you have, you would have to see a doctor and let him know your whole medical history and let him do a physical examination.

Take care, Annette
 
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booch007 replied to annette030's response:
I have seen Mitochondrial deases in my ICU and we transported the patient to Manhattan for care.

A genetisist that did this work up (I am thinking that is who did this) would also have assessed both parents and given you the "plan" of what may be the future. I don't think it is all the same for all patients.

For me the mitochondia for the heart muscle was involved and they did something in the city to help this patient....we sent for transplant and they didn't need to do it.

A large LARGE tertiary children hospital would be the best to look at the whole picture for your family and that is who would have your answers.

Gee, best of luck. Genetics is a double edge sword for us.(as parents) You worry about the kids in life all the time and then there is something that we shared with them (for me it is all the vascular issues....both my son's have my path ahead of them, one already having surgery in his 20's)....

Go get a family genetic work-up.....(remember it takes BOTH of you to GIVE the children a disease, other then that they are a carrier......) Huges, Nancy B


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