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

[Guest guest]

AnnMarie

You might want to talk to some others at the new insurance company. The

person you talked to might not be aware of it. Usually case management is

done by an outside firm that specializes in this and the insurance pays for

their service. They are usually registered nurses. They then deal directly

with the appropriate person at the insurance.

As far as getting a good endocrinologist and rhumatologist, they seem to be

easier to find than a good mito doc. I would suggest someone who is younger

as they have at least an understanding of how the mitochondria work and also

a medical center if near one, as they are more use to dealing with strange

cases. Asking around among your local friends might produce someone real

close that is good.

Don't worry about venting. We all need to do it at various times. That is

why we are here.

laurie

>

> Reply-To:

> Date: Wed, 24 Dec 2003 10:00:54 -0500

> To: Mito ,

> Subject: My Visit to Cleveland, New Insurance and some Venting!!!!

> Sorry Long Post.

>

> 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 :-)

>

>

>