Diagnosis-Answers?-Better 2004

[Guest guest]

Good Morning,

I am so disillusioned about getting help even with a diagnosis if mito can be considered diagnosed.

J.D. has complex I with a high possibility of complex 4. He had his muscle biopsy 2 years ago during his Christmas break. Dr. Shoffner stated that J.D.'s biopsy was unusual and considered J.D. a "singleton."

It has been 2 years and we still have not heard from the DNA sequencing.

The hospital here was willing to send J.D. to Dr. Whiteman at the Mayo Clinic in Rochester. They got him an appointment for 1/7/04 which I thought was great. The dr here talked with Dr. Shoffner and said that there were no answers for J.D.; therefore, it does not look like we will be going. It has been 2 years since Dr. Shoffner has seen J.D. and he said that he was not as severely effected. I agree and most thankful but in the last 2 years his window of energy has shortened.

It is my opinion that when a mito child looks too good to have the illness, there is still that ignorance in the medical field, "is he/she sick."

J.D.'s dr here said that J.D. has done well because I advocate well for him. This can be the same reasoning I do not accept that there are no answers or help. I think the medical community relies too much on medicine than alternatives to treat mito.

I pray that 2004 will be a better year for mito families.

Darlene