Got the determination letter from the NIH

[flutterbee]

And the answer is no. No reason given, just: "The Program's goals are to provide answers to patients with mysterious condition that have long eluded diagnosis and to advance medical knowledge about rare and common diseases. The medical team bases its judgment on whether or not there is a reasonable chance to achieve these goals."

That's all I can say right now.

 

[klmno]

HUH HUH... so I take it that the latter part of that paragraph is why they turned you down. That just hoovers- royally.

I'm sorry, Heather. That is such a bum rap. It might not do any good, but I'd be whipping off a nasty letter to them and my congressman and anyone else I could think of. If nothing else, it would blow off some of the steam blowing out of my orifices.

 

[Steely]

Try again Heather. Keep trying to apply.
The NIH is so under funded right now it is not even funny. My dad is a scientist whose sole income is from NIH grants ~ in the last 2 years he has lost more funding than ever before in his 40 year career.

You cannot take this as a personal defeat, but just like our difficult children, you gotta kick into your warrior mode.

Many hugs.
Steely

 

[TerryJ2]

Good point, Steely.

Is there a limit to how long you have to wait b4 you reapply, Heather? And find another name in another dept. so the same person doesn't get it.

{{Hugs.}}

 

[flutterbee]

It's reviewed by a team and they are keeping my info in the active file, so the letter says.

They're only taking 50-100 patients a year.

 

[tiredmommy]

I'm sorry Heather. Your disappointment is evident. {{{Hugs}}}

 

[susiestar]

I am so sorry honey. I wish I could go kick some kiester and tell them how important YOU are - and how much you should be one of their top 10 priority cases!

Gentle hugs.

 

[klmno]

I know I already posted, but it's soooo important for you to hang in there. I don't want to cross the line of getting political, but I have to believe that relief in several areas is being worked on. Don't give up!

 

[KTMom91]

I'm so sorry, Heather.

 

[Hound dog]

I'm so sorry Heather. Don't know what else to say. Is fam doctor going to try Cleveland Clinic?

I know you're devistated. I know I would be. Don't give up. (easier said than done I know) The answer is out there, and you'll find it.

((((hugs))))

 

[meowbunny]

((((((HEATHER)))))) I'm so saddened for you. I was hoping as I know you were.

 

[flutterbee]

I talked to my doctor's office today about something else and they didn't mention it, so I'm guessing they haven't got the letter yet (it was addressed to my doctor and cc'd to me). I'll be calling them tomorrow.

 

[Jena]

Heather

I'm sorry i'm really late to this. I'm sorry to hear that you recvd. that letter. I know you said they keep it on file, yet as Steely said keep bothering them, just like we do for our difficult child's.

((((hugs)))))

 

[Stella Johnson]

Heather,
Since I'm already in one of their studies I have contact info for my geneticist. WOuld you like his email to send your story to? If he likes what he sees he might be able to get you in another way.
PM me if you want his info.

Steph

 

[flutterbee]

You know, I don't even care if they give it a specific name. Let's just call it autoimmune and inflammatory because those conditions are almost all treated with the same medications.

I have inflammation. I run a fever with flares. I have flares. I have an elevated white blood count *every time* they do a CBC. My grandmother has RA, so it's in the family (wish she would have told me this, I don't know, 18 months ago!!!!!) and it's not uncommon to have more than one autoimmune disease at a time. If it walks like a duck....

So, let's bleepin' treat it already. The toradol has been by far the best medication so far. Way better than even the high dose steroids - of course, not having the steroid side effects helps a lot, too. But, I can only take it for 5 days and it knocks me out. I don't know how often I can take it, but I guess we'll find out.

 

[gcvmom]

Can you go to Plan B (Cleveland Clinic) while you appeal your case at NIH?

I know how frustrating it can be when you know something's wrong but you don't have any answers. Don't give up... someone out there will be able to help you.

 

[mrscatinthehat]

Hugs, don't know how this one slipped past me. So if they only take 50-100 cases a year does that mean every year you have to reapply or does just a letter or twenty do the job.

beth

 

[TerryJ2]

Aw, Heather.
I am so sorry. I wish you could be out of pain and able to move around the way you want. I wish I had a magic wand.

 

[Genny]

Heather, I know you've been to several specialists, but have you seen a rheumatologist? If so, try another. You're right, it smacks of autoimmune-something, and a rheumy would be the best person to diagnose that.

I'm hoping and praying that you get a break soon - you sure need it!

((HUGS))
genny

 

[flutterbee]

Genny, I've seen 2 rheumatologists.