The time has come.... I have 3 Drs. forming a team to HELP ME!! Yay!!!

[drsdonthelp]

I had my endocrinology appt. today to go over my lab work for my thyroid... I had seen the NP today, who by the way is sooooo awesome and down to earth and easy to talk to. She was just as frustrated as I have been with how some of these drs. have handled my constant neurological symptoms.

  After she was done with my exam and listening to EVERYTHING  that I said, her eyes lit up and was like, "Oh Honey, We are going to get to the bottom of this".

She said, " I am going to get DR. Bob (first name of my endo). He came in the room and listened to me as well. He was the one who sent me to my neuro. that I see here locally. He was alittle disappointed that I have been brushed off by him and that my slurrred speech episodes are being labeled as epilepsy.

He told me about a research hospital in Washington, DC called NHI or NIH, something like that.... He then left the room and called my family dr. to discuss what the neuro stated in his report regarding my VEP.

Soooo, between the Endocrinologist, his Nurse Practitioner and my family Nurse Practioner, they are all going to go over all my my lab results, MRI's, EEG's, VEP's and ALL DRS. reports to put something together to send me to this research hospital.

He did ask me how soon I would like to go, and I told him that I am taking a vacation from the doc/s for a while. He understood, and told me to enjoy some summer fun (if i could) but he doesn't want to wait too long, because if it is MS, he wants to get me started on the right medication to slow down the progression.  

I feel sooooo relaxed and relieved !!!!!!! I felt like I was heard, and not looked at like a whacko!!! The NP actually commented on how some of the Neurological technical wording I used , was impressive.

I started to tell her how I speak to others about this on an online support group and she was very happy I do this,(wow)
But, I told her that's how I have learned so much about this medical stuff, and that I want to know what the doctors are telling me, rather than walking out and not knowing what they are talking about.

soooooo, has anyone ever been to NIH in Washington, DC.?? If so, I would love to hear about it.

Thanks everyone for listening, what a great day today!!! (so far) LOL
Pam

[drsdonthelp]

Paula, Sadie and Lulu,

Thank you... I haven't heard anything yet from the doc's. Now that I have had time to soak this all in, I am ready to take the next step ASAP!
I didn't realize that this place only takes a select amount of people, I have tried to research this hospital and I haven't been able to get much info yet,.. but,, I am thankful for anyone's input on this.
I have been so happy about this, and yet, last night and today my right arm feels like it has a dull ache with some weakness and my right leg feels trembly.. I am not stressed, just excited!

I hope for some news on this soon, I hope they will accept me..

I know that it is about time!!! I have had my endo. for 8 years now, and my family doc. has been my doc. since I was 10 years old, maybe even younger, I just can't remember. She even came to my wedding in 2005. She has been there for me through everything. I know that she didn't always have the answer, but she would send me to a specialist without hesitation.

My journal of  "My Story"  says it all!! I am lucky to be alive, especially after the RAI treatment, I have had many ups and downs, and struggle daily with fatigue and other issues.. but I am thankful for friends and family to help me get through this.

Thank you all sooo much!
Hugs,
Pam

[Lulu54]

It sounds like these medical pros are the right ones to work on your team.  Now, rethink about taking the time off if they call sooner rather than later.

Julie (sarahsmom) is seen at NIH  - I don't think they take just anyone.  They are experts at tracking medical mysteries and would be a great place for you to land.  I hope it happens.

hugs, Lulu

[sadie405]

Well, it's about time!
Amazing how many weights lift when a person in power finally actually LISTENS to you!
NIH is one of the best places for research in the world-- some of our best-spent tax-dollars. So glad you are finally being heard.

Sadie

[figuerpa]

Good for you Pam,

It is about time someone is trying to get to the bottom of what is going on with you. I wish you the best of luck and I am with your doc as far as not waiting to long so that you can finally finally finally get to the bottom of what is going on.

This is the best news I have heard in a long time, when doctors work together you can usually count on them finding the answers and not stopping until they do.

So happy for you,
Paula

[drsdonthelp]

Melissa and Ren,

Thank you both,, and I hope I did hit the jackpot!! It will be a miracle if they can put all the pieces to the puzzle together..

I will go tomorrow if they call me, eventhough my family and myself want to take a break from tests and long drives... We will see!!! I hope they do call me today to give me an update.

I will keep everyone posted!!!!
Big Happy Hugs,
Pam

Big Happy Hugs

[rendean]

Pam ,
Congrats on your fantastic medical team!!! I am so happy for you!! Someone actually listening and then be willing to  act on it! You hit the jackpot.

I believe Sarah'smom  and another poster go to NIH but I don't recall who it is . They are pleased with the care they receive there.

Congrats again!
Ren

[madmelissa]

I just wanted to say "Congratulations"! I'm so excited and happy for you!

Melissa

[drsdonthelp]

Jen, Thanks!!! Hey you never know, they might call me tomorrow and say your all set up to go next week..... I know not to get my hopes up... Did you ever notice when you start to give up, that's when the ball starts rolling again!!!
I think I am still in shock about my appt. today.... I mean this NP had sooo much sympathy for me and was so down to earth that I felt like I was talking to one of my friends.
When she was doing my exam, and she hit my knee with the hammer and my legs went flying, she was like,, Ok, what did they say could cause this to happen,, (sarcastically with a laugh) and I laughed with her, I told her anxiety!!! She was like are you serious!!! LOL

I was at my Endo's office for an hour and a half.
So glad i went..

Hugs, Pam

[jensequitur]

Oh, man.... I would be so going right now, if I were in your shoes!  That's great - I'm so glad you've finally been listened to, and not blown off.

[drsdonthelp]

Thank you all so much for your responses. It is such a great feeling to be heard!!
I suppose if they can get me in then I am there!!! I will not hesitate, but even if they say they cannot get me in until the end of summer, I am fine with that too.

Wouldn't it be great if I CAN change my name to drsdohelp!! LOL

HUGS!! Pam

[torikat32]

Pam

jumping up and down in my mind so happy for you finally to be validated by not just 1 doc but a whole team . where do you go? I have heard remarkable things about the NIH my husbands ex went there a few months ago after getting no where with docs she had and they finally got a diagnosis of early onset parkinsons even though its a devestating disease shes in her mid 50's she is glad that she knows what her monster is and can deal with it. I hope you decide to go sooner I know that taking the summer off would be great but maybe you would feel better with actual treatment during the summer months.

Hugs,
Kat

[MonkeyMom4]

I couldn't be happier for you!!!

Congrats on FINALLY being heard!

=D

-Kelly

[JemmAus]

If this goes well, you may have to change your nickname!

[mindy1977]

I just wanted to say congrats...  I wish I could get that here.  

Good luck and I hope you DO enjoy your summer before you go.

[LisaJF]

Talk about collaboration with team effort in the best interest of the patient! Good for you!!!!!!!

Hooray!!!!!!

Hugs to you my sweet!  

Lisa

[sllowe]

Holey Schmoley!

Just popped on quick here, and saw your post 1st. This is such good news, Pam. I hope they pour over your reports and exams together. They spoke of the NIH, National Institute of Health - they conduct a lot of studies, it's a medical research center.

I don't know how the referring goes, but I do think it's a good idea to go while you are having the majority of issues. Just hope that wouldn't interfere w/your summer.

Happy for you, Pam - good day indeed!
-Shell