Re: frustration from lack of diagnosis!

[Guest guest]

Celia, tanya, Sunny and others still dealing with lack of dx. I can

emphasize with all of you very much. so many of you have been

dealing wiht this so much longer than I have. It is so frustrating

and such an emotional roller coaster. Yes, things have been so much

easier for me when I don't deal on it. It becomes so hard not to

dwell on it before and after an appointment and when you are waiting

for test results.

The support and information I have gotten from here, keep me going.

I feel for those who did not have this in the beggining. The more I

hear, the more I feel mito is the cause of my problems. Also, my

children are showing signs of it. At the present they are doing very

goo, Thank God! I have been amazed at how much better the care is at

children's Hospital. My daughters neuro has been so throurough and

is very well at explaining things. They take her problems much more

seriously even though her symptoms have been mild and she is doing

great at the moment. So far she has been diagnosed wiht autonomic

neuropathy. When I was diagnosed with this they labeled it small

fiber neuropathy. I left the office not understanding anything ,

with questions unanswered.

I am glad that my daughter is receiving such good care. She is

seeing an MD doctor in December. I just do not want her to go

through any unneccesary testing that I could be doing instead, I am

hoping my neuro will take things a little more seriously.

Tomorrow I go for my results of my muscle biopsy. I am hoping they

sent a sample to Cleveland Clinic. I feel very skeptical about how

things were performed. No matter what the news is tomorrow it will

be bad news. I am very anxious to find out what the bad news is!

Hearing everyones story and having children who are ill has givien

me so much drive to keep on pursuing this. It is so sad that so many

of us do not get the treatment we deserve. I am positive this will

improve with time. You guys are my heroes! Your courage and

compassion are beyond words.

Hugs to all!

Dawn a