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Kris4444

Omg I Am Seeing Dr. Tinkle On Wednesday!!!

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I can't believe it! I called the office and the lady that answered asked me a few questions on why I think I might have EDS. I explained my Mayo visit and diagnosis of hyper pots (sort of) and UCTD from Johns Hopkins. She put me on hold for like 5 minutes. When she came back she asked if I were by chance local and I said yes. She said that right now his appointments are all the way into the summer but since I'm local she could have him see me this Wednesday if I'm ok with the fact that if further evaluation needs to be done I might have to come back. UM YES!!!!!

I cannot believe that I reached my goal in 30 days of seeing everyone I needed to see! I am THRILLED!

Thanks so much to all of you on here. Without your insight and info on WHO to see I would still be struggling to find answers. I am soooo psyched! Even if I don't end up with a diagnosis of EDS at least it is one more avenue traveled to get to the bottom of this disease process that has interfered with my life and the life of my family for years!

So thank you, thank you, thank you!!! :D

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That is amazing! Congrats to you for all the progress you've made in such a short time! I hope you get more answers and are feeling good as new in no time!

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That is awesome. You must have some really good karma. Usually you have to wait forever to get into specialists.

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Lol. I know bebe. My other doctor is Dr. Wigley. I think they should write a childrens book together! Dr. Wigley and Dr. Tinkle talk about Zebras maybe? Lol! :-)

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This is so cool! After how frustrated and dejected you were when you first came on here it's great to see all your dedication and research and perseverance paying off! Super news!

Please share what you find out!

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Thanks Chaos! I can't get over how fast it's all happened. I've been dealing with this mystery disease for years and over the course of a week I might actually have a diagnosis or at least a treatment plan that has positive results. When I think of all the medications I've been on. .. just boggles the mind to think it may all get better with antihistamines and knowledge. Ha!

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Keeping my fingers,toes, knees and eyes crossed for you! :D

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I'm so excited for you. I hope you are able to get the answers and help you need. Keep us posted on what happens. Warm wishes and prayers.

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Thank you wildcat!

I have spent the day today sorting through medical records and typing out a family history as well as my own history. I am hoping that I have included everything that he will need.

They told me that they want me to include any reports of MRI's, echos, uryodynamics (bladder eval) . I included my reports from Mayo and Johns Hopkins as well as the letters that my rheumatologist had sent to get me evaluated at both Mayo and JH. I didn't include any of the GI stuff. Do you guys think I should?

Can you think of anything else of importance that I might have forgotten?

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Hi,

Sorry to keep you in suspense. The appointment was out by my mom and gram's so I stopped there and visited and went out to dinner.

So when I got there I met with his genetic consultant Kelly. She was very nice. She was thrilled that I came so prepared with my family history, my history and all my medical documentation. She asked me some questions and then talked to Dr. Tinkle while I waited in the exam room.

When Dr. Tinkle came in and introduced himself he was, as everyone has said, very kind. Right off the bat he had some questions that bothered him. He wanted to know about the UCTD (undifferentiated connective tissue disease) diagnosis from Johns Hopkins. He wanted to know why they changed it from Scleroderma to UCTD and what made them think it was autoimmune in nature. I explained that with Scleroderma you should have abnormal nailfold capillaries as well as positive ANA. My ANA came up positive only once and it was a VERY low positive so they don't really count that. Even though I have Raynaud's I do not have abnormal nailfold capillaries so it isn't considered Sclero.

The Raynaud's was another issue. He said normally that too is connected to an autoimmune disorder which EDS is not. It is not unheard of for EDS patients to have some AI issues but he wants to make sure we aren't overlooking anything.

He said had he not seen the UCTD and Raynaud's that he most likely would have dianosed me with EDS just on my medical history but that he is hesitant to do so until he looks further into my very involved history.

I am definately hyper-mobile so that part was easy. He said he may want to see my children who are also hyper-mobile just to strengthen his diagnosis if he decides to go that route because then we have me plus two family members. He said that he thinks that I have mild scoliosis which is news to me. He said from the top of my spine to the bottom there is about an inch and a half difference where it shifts over...hmm He said I am very flat footed. I showed him the prominent veins across my chest and shoulder area as well as my vericose veins in my legs. He noted the bruises on my arm and asked if anyone was hurting me at home lol, I told him no, just my dog!

He is very interested in calling my rheumatologist and picking his brain. He says he thinks that they are on the same page as far as thinking where this is going (he didn't elaborate). His biggest concern was that we don't overlook things and slap me with a label of EDS without making sure there isn't something more going on. He also plans to call the immunologist that I saw last week and ask her why she doesn't think it's necessary to do a bone marrow biopsy for mast cell. He wants to talk to her about a drug called Midodrine? Supposed to help with the vein issue and circulation but is concerned about my high bp.

The best thing was that he said he planned to take the weekend to look very carefully into my history with all of the info I gave him and see if we aren't missing anything. The fact that he is willing to call my doctors and pick their brains and not just jump to a diagnosis makes me really happy and that he will look at things over the weekend! Goes above and beyond! I truly feel that doors have opened for a reason and I'm finally on the right path!

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That's super good news Kris!!! I'm so glad for you! What a nice change from all the frustrations you had earlier. :)

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Thanks Chaos! I'm so glad that I went and so happy that it all happened while I was off work. Dr. Tinkle said he thought taking the 30 days was a great idea.

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What a gem of a doctor!! Any doctor that willingly wants to review a case and think it over is thumbs up in my book. It sounds like you will be having some real help soon.

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