Referral in hand... now I'm really scared!

[heartspun]

I haven't posted since my thread in the Introductions forum... I have been dealing with a change in insurance, my husband's new job, winter break for the kids, and so much else. Finally my referral authorization to UCSF arrived in the mail. Now I am at a loss... kind of scared about what comes next! I have so many records, I can't afford to fax them to UCSF, so I have asked if there is another way to get my records to them. Still, the constant worries are sneaking in. What if they ignore my records entirely? What if my symptoms disappear before I can get in to see the specialist? (My left ear has been "gone" for over two months - now has started burbling in just the last day or two) What if I really am not sick enough, what if they tell me it's all in my head, what if they tell me it's no big deal?

Merry Christmas to me! BLAH!

[Dirty Don]

Merry Christmas to me! BLAH!

OK Scrooge, calm down, you've done all the right things so far, getting help, good professional help...as I have learned and been told a thousand times, take baby steps, be glad for each step forward...cuz you really don't want to go backwards with this at all! The best to you heartspun, you're on the right road, it's just not going to be an easy one, not for any of us no matter the situation, but we, on this blog, will be here, so log in more when you can, let us know, and we will gladly offer you support and advice...LOL! Take care!

PS: my ears and sinus are bad, I have the gurgling too, ENT (on my team! sheesh!) doesn't seem to think much of it...but it IS a pain, for sure!

[Al]

I understand the feeling--with everything going on, you feel like you have to recover from the holidays; a little boring personal time can be therapeutic! As for the records, I suppose you can hand deliver them. Your new people are obligated to include them in your official dossier, though how much attention is paid to those records is up to the individual doctor. As for telling you that it's "all in your head", a specialist won't do this, though he or she may try to get you to think less about your situation. In all cases, if any doctor does suggest such a cop-out, my advice is to smile, chuckle softly, and gently point out that, "that is the last time you will tell me that." Can you imagine an employee telling his boss that the company's issues are "all in his head--it's no big deal"? As I keep reminding people, you are hiring the doctor to do a job. You are his or her boss. If they do not do the job you are paying them to do, again you say, "I am disappointed. I would like you to try harder." I realize that goes against how many people see the doctor, as some kind of demigod. But it is the correct way.

Al

[Sangye]

I'm so glad you're getting to a Wegs center. Don't worry that they'll think you're nuts. They see people with symptoms that come and go all the time-- that's classic for Wegs and any autoimmune disease. Call them to ask about options to get your records. I know JHU won't let you hand-carry for your initial appointment. They want them weeks in advance so they can review them beforehand. At my first appt with Dr Seo he had gone through every page of my pile of records and had underlined and written comments throughout. He had my entire history memorized, down to the date.

[jola57]

You are going to the right place and I am sure they have seen all the symptoms there are and those disappearing too. I would ask the place you got the referral from to send the medical history, I would think that they are obliged to. Ask. Good luck.

[Al]

You are going to the right place and I am sure they have seen all the symptoms there are and those disappearing too. I would ask the place you got the referral from to send the medical history, I would think that they are obliged to. Ask. Good luck.

They are indeed obliged, Jolanta, to send the records upon request. However, they are allowed to charge (whatever they want) for the copying/faxing. Considering the number of pages, this could be prohibitive.

Al

[Sangye]

I've never had a facility charge to send my records to another facility, even though legally they can. Some charge patients for copies. JHU charges a lot for patients to get copies of their records so I have given up getting them. Mayo used to send a stack of the clinic notes and all lab results to me after every visit without having to request them or charging me.

I have found a way to get copies of my JHU labs every so often though. When I'm at a doctor appointment I ask them to print out a copy for me. They don't mind and I get them for free. :wink1:

[vdub]

I have copies of everything and all the doctors have been very good about giving them up with no charge and no hassle.

As far as showing up at the specialist and not having symptoms, not to worry, your history will leave enough tracks....

Wait until you are diagnosed and then you will attribute everything from joint pain to sniffles to gpa. When I get seasonal allergies now, I first think of whether the wegeners is coming back and then I settle down and think it's just the flowers blooming or some damn cat (my highest allergen)....

[Nancy-S]

my advice is to smile, chuckle softly, and gently point out that, "that is the last time you will tell me that." .... "I am disappointed. I would like you to try harder."Al

I really appreciate that advice. I can do that, I have no problem with that at all. I won't go into all the details, but years ago I got severely anemic. I was almost in need of a transfusion. Prior to that when I complained about feeling icky or tired, the docs reply was "pregnancy is tiring". It was my third pregnancy and I knew what was normal for me. When he figured out it was anemia, he accused me of not taking my supplements properly. At that point, I had it with him and wrote a one-page letter. In it, I explained that he was the professional, I was not. I needed to trust him and needed him to trust me. After that letter, things changed...for the better. He has always been thorough and professional since that time.

Heartspun, I feel the same way you do. My first appointment is in a couple weeks. I'm scared. At first I worried that I would get there and he would tell me I wasn't sick. I quickly decided that was my goal. I WANT to hear that. I hope to hear that. But if I don't hear that, then I'll get treatment. Either way, the visit will be a good thing. I hope that you get good news, and if it's not-so-good news, I hope that you find comfort and confidence in the care you receive.