To Barbara Seaman

[Guest guest]

Hi Barbara, Thank you for posting so much information to the new

member. I am sure you remember about how my electron microscopy

mentioned a possible variation of a CPT dificiency. Since I have

posted this ,I went to see my neurologist.

My neurologist told me that something metabolic is going on, some

kind of enzyme deficiency, possible CPT. SHe then stated that this

is common among the general population. She did not think there was

enough biopsy left for futhur analysis and felt it would not be

worth looking into any furthur. My symptoms and abnormal gait don't

match. I asked her what she thought my problem was. She said a

variaty of things...fibromyalgia, dysautonomia, some kind of enzyme

deficiency....See this Dr accused me of having a conversion disorder

along with my dysautonomia. I considered this diagnosis, but became

100% positive she was wrong. I could not convince her to change her

mind. I made a big stink about it and other Drs ordered an EMG and

convinced her to do a muscle biopsy. Her associate was going to take

me as a client,if it was OK with her. Well, she wanted to keep me. I

know she is still convinced that so many of my problems are

psychological. She told me there is nothing else she can do for me,

just take the meds my PCP put me on, but then decided to put me on

the mito cocktail. Sorry this is so long.

I was so flabergasted after this appointment and felt so relieved to

not be going back to see her again. Now I know she got CPT

deficiency and Madd mixed up. Fortunately I am goig to see Dr

Whiteman a Mayo clinic on Jan 13th. I have heard good things about

him. It still is scarey going to see another Dr. My illnees has

progressed this past year. I feel lousey most of the time with so

many symptoms and my ability to walk is getting less and less.I do

try and stay active as much as possible. I often overdo it to find

myself in the pit again. It takes so little to get there. This can't

be fibro!!! My neurologist just could not understand why I had a

handicap parking sticker and could no longer work as an occupational

therapist. I am finding it hard to walk far on cement without

tripping and falling.

If Dr Whiteman can not give me an answer, it would just be nice to

have a Dr validate my concerns. It would be so wonderful if this was

psychological, because then I woudl have more of a chance of getting

better. WEll two years of intensive psychotherapy and

antidepressants and my physical symptoms are much worse. Fortunately

my counselor no longer agrees with the conversion disorder diagnosis.

I guess I just needed to vent and felt like tattling on my Dr.

Thanks!

Dawn A