My Visit to Cleveland, New Insurance and some Venting!!!! Sorry Long Post.

[Guest guest]

Apparently so much of the diagnostic process was skipped over with me,

that Dr. Tsao feels that we should start at the very beginning of

testing. The docs

that I have here in Ft. Wayne did not do any preliminary testing, just

skipped right to

a muscle biopsy because of Joe's dx. and refused to treat any symptoms

until I went to Cleveland. I finally had some initial labs done there

and will have

a return trip for some further testing. He is also referring me to a

rhumatologist (sp?)

and an endocrinologist (sp?) for further testing there. Any

suggestions on finding good

ones would be appreciated. Apparently nothing has been ruled out so

he is

putting aside the mito diagnosis and making sure that nothing else is

going on.

I feel relieved that at least something is finally happening but

frustrated to feel that

I have to start all over. The swelling has been really bad lately and

I am gaining

significant amounts of weight (no diet changes and I still do a

vigorous work out

3-5 days a week). Just so many things going on, it is getting very

overwhelming.

The fatigue is much worse and so is the joint and muscle pain (cold

weather is partly to blame).

I just wish I had more answers and a solution or plan of action to

relieve some of it

as I am afraid to try to self medicate the symptoms.

We are also starting over with a new insurance company as our old one

is going out

of business. While we were told initially from the new one we could

have a case

manager, when i called to get it set up for Jan 1 so we have no

problems with

transition - I was informed that they dont have case managers or any

personnel that

handles individual needs. MORE Frustration!!! I researched for weeks

to choose

the plan that would work best for our family and now we are stuck with

this. I have

already put a call into our benefits center, even the ins. co's site

says they have special

care coordinators. I hate having to start the fight all over again, I

am so tired all the time.

It takes so much out of me to keep fighting, but there is not another

way.

Oh well , thanks so much for letting me vent. If anyone has United

Health Care in IN please email me

off list and let me know if you have case manager and how your plan has

worked for you.

Sorry this is such a long post. Thanks so much for understanding. It

means so much to know

I'm not alone dealing with all of this.

Thanks so much,

AnnMarie-

Complex IV

Married to my best

friend Rick, mom of (14), (11), Cassandra(5 1/2)

and Joe(3 1/2) - complex IV, lactic acidosis, CP, tethered chord

syndrome,

dysautonomia, and a smile that never quits

:-)