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

[Kris4444]

Thanks Sue! I'm very happy with the way things went. The tough part is the waiting as it seems as though it may take several weeks to sort through everything. He said he will for sure have an answer for me before I see my rheumatologist next in April. So now I wait....

[roxie]

I'm impressed! And excited for you. I take midodrine. I've debated if I should go to him (or another eds specialist) but being so far away is rough. Your experience puts another check mark in the yes column though.

[Kris4444]

Thanks. I just read about midodrine. It doesn't seem like the medication for me but who knows.

I would definately see if you can get in to see him. He seems really caring and kind. I honestly think he will figure this out for me.

[ukwildcat]

I'm so happy that you had a good appointment. It is amazing when a doctor actually looks at the medical records that you send them. Also, that he wants to work with your other doctors is amazing, that is a rare thing. I hope they come up with a dx and a treatment program that will help you. I live by Cincinnati and I have an appointment with Dr.Neilson in April (what they told me was that Neilson worked on Dr. Tinkle's team when he was located in Cincinnati at Children's Hospital.) I have been waiting for this appointment for many months. After hearing about your apt. I am now second guessing myself if I made the right decision with this doctor because Tinkle sounds awesome. I was just trying to stay close to home because my family already drives me hours to see Dr. Grubb. However, a great doctor is definitely worth the drive. Many doctors are a waste of time and create even more stress. When a doctor says what is Pots, or EDs you know the appointment is probably not going to go very well. However, a good doctor is first step(sounds like you found that first step) and you have been in my thoughts and prayers that you find the answers and help you need. Please keep us informed about your progress.

[Kris4444]

Thanks ukwildcat! What I liked the most was that even if he doesn't diagnose me, he really wants to know what the heck is going on. He pointed out that I have been worked up by several major institutions and there aren't two of them that agree...it's time to figure it out and I think he's the guy who, with the help of my WONDERFUL rheumatologist at NW will do just that!

I wouldn't second guess your appointment. They say things happen for a reason. If this doctor worked with Dr. Tinkle then he is aware of the disease and hopefully will give you the help you need. I will keep YOU in my prayers that you get some answers.

I will let you know as soon as I hear something more. Please let us know about your appointment as well!

[HopeSprings]

Yey for you! I love Doctors like this (haven't personally met one yet). Hope he figures things out for you... which is how it should be, instead of us trying to figure things out! Please let us know what happens.

I have a few questions if you don't mind: What is Undifferentiated Connective Tissue Disease and how was that diagnosed? I have Raynauds too and have been told it's a common thing and doesn't really mean anything. I'm surprised to hear him say it's normally connected to an autoimmune disorder. Did he elaborate on that? And along those lines, do you also have livedo reticularis? Also told this likely means nothing, but I don't think so.

[Kris4444]

Hi Naomi,

UCTD is diagnosed when you are absent of positive ANA but have several criteria for autoimmune issues. I for example, have the butterfly rash of Lupus, the GI symptoms of Scleroderma, the dry eyes and mouth of Sjogren's... so I have a little bit of each but not enough of any to be able to give a diagnosis. Many times they will call it UCTD with characteristics of ______(sclero, lupus, sjogrens).

Raynaud's can be primary meaning that the is no underlying cause. Sometimes people who smoke get Raynaud's. Many times though Raynaud's is secondary to a primary autoimmune condition. It is very often seen in Scleroderma and Lupus. I have the full blown version of it which is quite dramatic, all 3 color changes.

Yes I have livedo reticularis. I get it when I am cold. It is often seen with autoimmune issues as well. I have tested positive for cryfibrinogen in the past and have been diagnosed with cold urticaria so my body HATES the cold all of a sudden but has also decided that it detests heat as well as of this past summer. It's all very confusing.

Hope this helped answer some of your questions.

[HopeSprings]

Oh, I get it! Very good explanation - thank you for that. I wonder if they could just treat you as autoimmune (I'm not sure what that entails) since so much points in that direction and see how you respond. Hopefully, he'll figure it out though and give you more definitive answers.

[Kris4444]

They have been treating me as autoimmune but I'm still having issues which is why we are looking at other avenues. The EDS stuff only came about after going to Mayo and getting the hyper-pots diagnosis. Then things started to look a little different.