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Tuesday, April 4, 2017

My Visit With the Extraordinary New Doctor March 31, 2017


I saw the new doctor (Allergist/Immunologist) on 3/31/17.  It was the morning of my niece's Sweet 16 Party (See More On The Sweet 16 - In Pictures And Video Clips) .  

The morning was rainy and windy and I was very nervous driving and very upset about my current issues - IT coming back (see Why Am I Not Posting Recipes? Because IT Has Started Again!) The people who were supposed to come with me could not last minute due to personal situations. 

My Second Visit With the Extraordinary New Doctor April 21, 2017

My Third Visit With the Extraordinary New Doctor May 9, 2017

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I was nervous about not being able to go to or stay at the Sweet 16 also (See Awesome Anticipation Of A Delightful Night)

The appointment went well!  I liked the doctor as a person and professionally.  She was extremely thorough.  The appointment lasted three hours!  If this doctor can help me, I will spend six hours in her office.  



We had a comprehensive conversation.  She listened intently over an hour, she asked pertinent questions and then outlined her plan.  She had me go back eight years, from the day I ate that cookie and wound up in the ER (see Welcome - Make Yourself At Home - Some History On Me)  She took detailed notes.

I will not say what she thinks I have until I have a diagnosis.  However, she is thinking the same thing as the PA in the ER (See 5 Signs You Need To Go To The ER For An Allergic Reaction)



She ordered extensive blood work.  Apparently these are tests that have not been done before. (See Why Do Doctors Order Their Own Testing?)  We are starting there.



She reviewed what the previous allergist sent her to get an idea of what has been done.  She also asked me to sign releases (she is requesting medical records from my most recent Allergist, Hematologist, Nephrologist, Gastroenterologist, Endocrinologist, ENT and every hospital I was an inpatient in during 2016 or where I was seen in the Emergency Room during 2016/2017.)  

As I've said previously, if it's a GIST, I've seen them! 

She wants to review what they have done to see if something there gives her more information and to see what she may want to repeat and what direction she may want to go in.  



She told me that if it is what she thinks, no Gastroenterologist will ever find anything wrong. That is EXACTLY what's happening.  I've been to about six different Gastroenterologist and NONE of them can figure this out.  Yet I suffer with terrible stomach issues.  According to her, the intestines also swell, just like my neck, face, nose, tongue, etc. 



I even swallowed a pill that was a camera (capsule endoscopy).  They found nothing.  They can't figure out this horrific stomach issue.  Now... maybe, I understand why!  I have an appointment with another Gastroenterologist coming up.  I may not have to go! 



During my last endoscopy/colonoscopy when I was an inpatient a few months ago, they found nothing other than... SWOLLEN INTESTINES, which they told me they couldn't explain! Hmmmm. (See The Time-Censored Light Switch) for a funny story about that hospital stay!



The new doctor told me about nutrition she can prescribe that no one is ever allergic to. She says it tastes horrible, however, being I am having issues eating, she doesn't want to create more issues (vitamin deficiencies, lack of protein, etc.)  

She says my body will start to breakdown from lack of proper nutrition.  This needs to be approved by my insurance company, so we await that. Her office is working on it. No other doctor ever mentioned this!



I already have very low Vitamin D (See Dealing With The Issues Associated With Hashomoto's Disease).  She also wants to rectify that as she said it is a problem.  I explained that so far, no doctor or pharmacist can give me Vitamin D that doesn't have something in it I can't have (gluten, corn, etc.).  



I told her about buying the Vitamin D that said gluten free on the front of the box but that actually contained wheat!  (See Round and Round We Go... The Saga Continues)  She is going to work on finding me a Vitamin D I can take, she has to make some calls  (See What Is A Compounding Pharmacy And Do You Need One?)

I had to take three breathing tests during my visit.  It was like playing a game on the computer, there were little graphics and characters!  The technician and I had some laughs. 



The doctor gave me two notes to hold on me.  She said the next time I get the swelling, I must go to Stony Brook Emergency Room.  I must give them the notes and state she is requesting these specific tests be done while I'm having this "attack."  

She also might admit me into the hospital, (Stony Brook) depending on what the tests show.  She wants to reproduce what is happening and do further testing while it's happening.  It will be a controlled "experiment."  



She explained that if it is what she thinks it is, it is treated completely differently than a true allergy attack.  That is why the treatments they give me in the ER do not completely solve the problem.  It does when it's a real allergy attack, not when it's IT



She agrees with the other doctors.  While I do have allergies (gluten, nuts, soy, corn, eggs, as well as, allergies related to medications and chemicals) this is not all allergy related.  Something else is going on.  But what?  That's the question. 

 She feels it is autoimmune related.  I have Hashimoto's Disease. When you have one autoimmune disease, you tend to have more.  No one is allergic to everything!  



She also said that if I have what they think, the doctor I need to see is the same one the other allergist and the PA in the ER recommended.  I explained to her that I did contact that doctor. but he doesn't take my insurance.  



She is going to speak with the doctor if the diagnosis turns out to be yes. She can't guarantee he will see me, but sometimes a doctor will agree as will the insurance carrier agree to pay (if that specialist is the one who you NEED to see).  I knew that, but I also knew, a doctor would have to fight that out with the carrier, not me. 

She said another option is that he can be called in through the ER and that being it is an emergency, it could be covered that way (which I knew from being in the insurance field for years).  His office swore no, but I wasn't buying it.  



This is the first doctor who has given me hope.  The first doctor who hasn't either given me a blank stare, thrown his/her hands up, told me it was all in my head, accused me of being a drug seeker, shrugged and sent me to another specialist, etc. etc. (See You Should Have Demanded... Part One and Why Was I Gaining Weight? Why Couldn't I Lose Weight? Part Two).  

I feel like there's light at the end of the tunnel!  I came home relieved and hopeful.  It helped me to enjoy the party.  


hubby and I at the Sweet 16
I was a bit more relaxed at the party and able to have fun!

Stay tuned....

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Articles on the horrific insurance mess coming soon!


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2 comments:

  1. Oh I am so happy you finally found someone!!! Hopefully they can help you once they figure out what "it" is

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    Replies
    1. Thank you. I'm really hoping. It's been crazy going through life trying to figure this out.

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