For the long time undiagnosed

[rose]

Yes you! the ones in danger of becoming "lifers" here!

The National Institute of Health has launched a new program. It is accepting approximately 100 applicants a year. It will devote as many as 25 doctors with different fields of expertise to those chosen, and for those that do not make it into the program, the NIH will still attempt to give some guidance as to a path to follow for a diagnostic attempt.

A referral from your doctor is required. You yourself cannot just call and say that you want to be considered. However, it is my understanding (from a friend that should know, did not visit their website) that the NIH does not charge for any of its services, if you get in, you're taken care of, regardless of insurance or ability to pay.

The website with more information is:
http://rarediseases.info.nih.gov/undiagnosed (do not put in a "www")

Good luck!

 

[Sammantha]

I'm right on it Rose! Sam.. ps, i hope you had a great Thanksgiving........ I started my new job and have more empathy for medical assistants and receptionists! I have been able to keep up with it so far, didnt have breathing issues until today, but i was able to sit down.... not like my old job.... My gallbladder surgery could not have went any better and i go for my check up on Monday.......the hospital even sent me a get well card! I am going to look up that site now, thanks Sammantha

ps. (knock on wood) my muscle wasting has platuead, and i am only having difficulties with the wrist strength, which is really good considering it has been two plus years since the start.....although i dont like how the breathing muscles started in, i am hoping that plateau's also......

 

[BethU]

Sam, I'm so glad the surgery went so well, and that the job is do-able. Don't get too tired ! I'm really happy for you that this worked out so well.

Rose ... that's a fantastic piece of information for our friends here in limbo.

 

[planningguy]

Rose thank you... we finally have our own government program. Does it come with a tax break, and a buyout .

Seriously I think I will look into this.

Robert

 

[wheeler641]

I am going to look into it also, checked out the phone number with reverse lookup, it is in MD. Wonder how long this will be going on and what is the time frame in getting in.

 

[BethU]

Hi, Wheeler ... if I were you, I'd move fast. This is a fantastic opportunity for the Lucky 100.

 

[rose]

I am bumping this old thread up. Even though the original new release I sited said only 100 applicants a year will be accepted into the program, it still might be an avenue for those with very puzzling symptoms to receive some sort of guidance or contact, in other words, avenues for diagnosis.

I think of some of the more puzzling (to us) cases here, are probably not the "run of the mil" patient to any doctor, anywhere.