Relief! And a bit of hope!!!

[flutterbee]

My GP gave me two steroid injections today - right shoulder and right sacroiliac joint. The injection she uses also has lidocaine (sp?) in them, so it's almost immediate relief. The pain from my shoulder was radiating up my neck causing all the muscles or tendons or whatever is there to feel bruised to the touch, causing my right ear and eye and just the entire right side of my head to throb. I still had to take pain medication for that. But, the shoulder and hip started feeling better immediately. Hopefully, by tomorrow the steroid will start working and I won't need the pain medications so much. Wow. To feel somewhat normal again is just amazing. My GP also increased my ace inhibitor and this one has a water pill in it that she thinks will be give me more relief with my BiPolar (BP) issues. My GP can't believe that I can't get into the cardiologist until mid-September. I'm established at the practice - not a new patient.

As soon as I got to my GP's office, the nurse/receptionist handed me a copy of an article from the Journal of the American Medical Association. Mona (the nurse) said that read it while sitting in the Taco Bell drive thru last night and instantly thought of me and showed it to Dr M first thing this morning. The NIH (National Institutes of Health) Clinical Centers in Bethesda, MD has a new program called the Undiagnosed Diseases Program. Here is a quote from the article:

But now clinicians can tap into the expertise at the NIH by referring such patients to the Undiagnosed Diseases Program. A panel of 25 NIH physicians from an array of specialties will review the cases and determine which patients should be assessed at the NIH Clinical Center. Those who are selected will undergo a week-long evaluation at the center, with their travel and treatment costs covered by the program, and any of dozens of specialists from the NIH may be called in to consult.

Some patients also will be invited to participate in studies at the NIH. After the consultation, patients will be referred back to their clinician for ongoing care.

The NIH Office of Rare Diseases is providing $280,000 per year in funding for the program. In addition to using existing staff and resources as the clinical center, the program will employ 2 nurse practitioners to oversee patient recruitment and other logistics.

My GP called them today and left a message. She seems to really think I could get into the program given my history, symptoms and lack of a diagnosis. If this doesn't pan out, then the Mayo Clinic (finally found out that it is the Mayo Clinic and not the Cleveland Clinic) has said they want to see me and my GP's office will work with my insurance to try to obtain an approval.

Here is the link for the NIH program:

http://rarediseases.info.nih.gov/research/pages/27/undiagnosed-diseases-program

I'm so excited. And how wonderful that the nurse read this and thought of me. You know, I really am so blessed to have the people in my life that I do. Truly.

Please keep your fingers crossed, rattle beads, say a prayer, light a candle and/or do the naked chicken liver dance for this. I'm so excited and hopeful that I could just burst.

 

[everywoman]

That's great. I'm glad she saw it, thought of you, and your gp took the initiative.
I hope you find some answers soon.

 

[tiredmommy]

That's great, Heather! Maybe Linda will see this and you two can be roomies at the NIH....

 

[Andy]

 

[amazeofgrace]

good news, and praises for you finally feeling some relief!

<<<HUGS>>>

 

[flutterbee]

I thought about Linda, too, as well as a couple other members of the board.

 

[meowbunny]

How wonderful. I truly hope something pans out for you. What a great doctor and nurse you have there.

 

[Hound dog]

I'm glad you posted about the NIH, Linda would be a prime candidate as well. And it's awesome that your GP's nurse is so on the ball.

Wow. If you could get into a program like that.........Wow.

Keeping body parts crossed, saying prayers (as always), and hoping hoping you can get in and get some answers.

Glad to hear the shots are helping.

((hugs))

 

[smallworld]

Heather, if you come to Bethesda, you'll have to let me know. I live very close to NIH.

Sending good vibes that the NIH program accepts you.

 

[klmno]

That is great news, Heather, and I'm glad you are finally feeling a little relief!

But- did this blow your plan for keeping a little distance with "too-close-too-fast-who- are-you-anyway woman" tomorrow evening?

 

[flutterbee]

Thank you for the support. I am so hopeful.

SW - I will definitely let you know. In fact, there probably won't be anyone within a 2000 mile radius that won't hear my screams of joy. LOL

 

[DammitJanet]

I hope this pans out. I have heard good things about these programs. I think Steph on here goes through the NIH.

Better let me know too. I can get up there easy and stay at Jamies and run on up there to NIH.

 

[Genny]

See - it wasn't a train after all
Serendipity is a wonderful thing. Keeping fingers crossed that it works out, and you get seen SOON!

Genny

 

[4sumrzn]

That is WONDERFUL!!!!!! I'm very happy for you & will be hopeful for you too!