Hello,
I am new to this and look forward to having folks to talk to. I have VKH and recently diagnosed with CIDP to boot. I am having a whole mess of trouble coordinating Doctors and Neurologist and Insurance and Hospitals.

Thanks for having me,
duanep1963:

Welcome duanep1963.

Someone will be along to help.

Hi. I am also new to this site. I have been diagnosed with cidp too. It looks like you have one rare disorder and another extremely rare one. It is overwhelming to coordinate all that you say. I think if you start with a good neuro the rest will be made easier. University hospitals are great if there is one near you as they are a one stop shop. It helps that they share records and you won't have to go into details for every visit. There are many great people here to help.

Hi duane,
You say you are diagnosed with VKH.
If you mean Vogt Koyangi Harada Syndrome, I just wanted to let you know that there was someone only recently (July) who posted here asking if anyone else had this diagnosis as it is apparently very rare.

They posted on the

Autoimmune Disorders Forum

and in

General Health Conditions & Rare Disorders

duanep1963,

It is great to have you come and be with us. You will find a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Howdy to both of you and welcome.

I agree with February's observations about university hospitals (list) and the importance of good specialists, and I tend to value and rely heavily upon my PCP, who probably knows me best (as he's seen me longer/more often than the others), is my first contact/"go-to" guy, coordinates the various specialists, testing, prescriptions, etc., writes my ongoing prescriptions, sometimes acts as my advocate with insurance and the university, and more. On the medical-professional team of my support network, he functions as my manager/quarterback.

None of this is to say I have blind faith/acquiescence in the medical system. We all still have to be our own best advocates and take a pro-active role in our medical care. Having the best team(s) we can assemble (half of all doctors are below average ) just makes the task a bit... less frustrating (to put it mildly)

Doc