Yesterday I saw a doctor who declined to take me as a patient because my case is "too complicated" and he's not up for dealing with it. So he referred me to another doctor today. I went there with high hopes. But it was the same story.
"Too complicated of a case."
He "didn't feel comfortable taking a patient as sick as me". He wasn't up to the challenge of a patient with so many diagnosises and with a history of perlonged hospitalizations.
I burst into tears of frustration and hopelessness when he told me.
I never thought it would be this hard to find an internist! Why is it that the sicker you are the HARDER it is to find a doctor?!
I feel so rejected and discouraged. Like I'm being punished for my illness.
And I have some pressing issues that need taking care of by an internist. (I'm retaining so much fluid in my legs, I can't cross them w/o leaving a quarter inch painful indentation!)
I know I'll figure something out but right now I feel so lost and hopeless. :'(
If I knew how to give you a hug through the computer I would.
Gee, what do you want, you don't expect them to work for their money do you? All kidding aside, I understand that some doctors would be dealing with something that is over their head and would rather have them tell me that rather then tell me it is all in my head, but not to address water retention seems a bit ridiculous.
I see 8 different doctors on a regular basis and I will be seeing my 10th specialist in August, so don't feel bad, no one said having Sjogren's was going to be easy!
Hi Lauren
That's outrageous!!
Is there a teaching hospital that could take you aboard? I only have an inkling about how your system works, so I don't really have any sensible suggestions. Here in the UK we go to our GP and then get referred to specialists for different symptoms. The flaw in that is that sometimes there is no co-ordinated overall picture but I can't imagine not getting treated.
There are also specialist units in the UK to whom 'difficult' cases are referred. Like there is more than one dedicated lupus centre and they would probably also deal with sjoggies.
Is there nothing similar in the US?
Is there a local medical authority you can appeal to? No treatment is just not good enough.
((((( WN ))))) Scottie :)
Hi Lauren,
I agree with Scottie about a teaching hospital. Actually most of these doctors at these hospitals will NOT see you unless you have a firm referral from your doc. It sounds to me that your doc would want to jump at the chance to refer you. Call your doc and (respectively) demand a referral to the hospital. Gosh, I hope it all works out for you.
what the he**??? >:(
call the 2nd guy back and ask him where you should go now.
Wow...what happened to the oath they took? I am so sorry you are in this situation. Hang tough with doctors. They should be required to help you. Hugs to you. Redetha :o
I think you should report this doctor to your state's medical board. In some states it is called Board of Medical Examiners. I worked with arrogant doctors for many years, and while I know there are also many good docs out there, too many of them have the "God" syndrome and need to be told abut their behavior.
Hi Lauren, If that was happening in the UK, it would be on the front page of every national newspaper..
Do you have a local newspaper that would be interested in your story ?
Haven't you got local members of the Goverment to take up your case of pure neglect.. It's a disgrace..
Hope something happens soon for you ,, Dolly x
I also recommend a teaching hospital also. We have the University of Iowa Hospital here in Iowa that is one.
I can understand some of your frustration. I had 2 year of emotional "H' going from dr to dr who couldn't figure why my bloodwork was so off. I am very thankful I didn't have any bad symptoms as they didn't have a clue. I also felt several doctors in the past were actually mad at me because I wasn't sicker! >:( I got CTs, MRIs, 1 biopsy, 1 needle aspiration and thousands of blood tests with no answer. In 2005 an internal med specialist decided to call it indolent lymphoma. 2009 an immunologist thought to run a test for SJS and BINGO - I came up very high for it both A&B. I also felt like nobody had been listening.
Geesh too complicated! The drs I had loved coming up with new tests to run and diagnosises to torture me with. Maybe it is not A doctor you need to see but doctors "Plural". I have three on my "staff" so far.
Maybe check into that and I would also check about a teaching hospital.
BTW: My dad had fluid in legs and was on lasix and he had bad lungs due to emphysema. Fluid there could be caused by a number of things. I wouldn't let that just pass - be more proactive and get after the drs about that. I learned to have to be proactive about your health and with the drs. As you found, some think you are too complicated and some will pat you on the head and send you home with a bottle of tylenol. ::) ::)
First off hugs and kissess from Jenna and I. You need to get ahold of your disabilities department of your state, A doctor refusing to treat you is just plain discrimination. This is the US for Gods sake. Sjogrens syndrome is a disability and you have rights under the disability acts in your state.
Lauren-
I agree that this is absolutely outrageous, but as Epson says, hopefully they're admitting that they don't know enough to cover your case and not that they're just lazy.
I don't know where you are, but is getting to one of the Sjogren's specialists in the country a possibility? If not, I agree that you should look to a teaching hopsital for a doctor with the knowlege to treat you as you deserve to be treated. And as much as I HATE to make such a recommendation to anyone, if the swelling doesn't let up before you find a doctor, head to the ER to get it checked out.
Hang in there and remember we're here if you need to vent,
Tracy
Thanks everyone for all the support! Good news! While I was as my AI Pancreatitis specialist today, I asked him if he has anyone he knew who might be a good fit for me as an internist and he recommended someone. So before I went home I called their office and they had a cancellation! I saw him this afternoon and now I have a wonderful new internist! He is super enthusiastic about corralling my team of 10+ specialists and helping deal with my general health and making sure things don't fall through the cracks with so many doctors looking into their specific areas.
I left feeling giddy!
More later when I'm not so wiped out from two appointments in the same day...
*hugs*
-Lauren
Congrats, Lauren! Glad to hear that you now have a good doc!
Get some rest and I'm looking forward to hearing more about it!
Leslie
Glad to hear the good news Lauren! Keep us posted when you feel up to it!
That's wonderful news Lauren! ;D
Well done Lauren!
Kathyx
Third time lucky - woohoo! Nice to read good news in here.
Take care - Scottie :)
Im glad, at least there are a few good doctors left, hope you feel better real quick.
Thanks everyone! I'm so happy to have found him! I just did a full write up on the ordeal on my blog if you are interested in reading it: http://novelpatient.com/2009/06/12/in-search-of-a-novel-doctor/
Going to submit it to Grand Rounds. More people should know this kind of thing goes on...
Lauren, at last great news and positivity for you...I'm so pleased :)
Take care Lesley (NZ)
Lauren, Doesn't it make you wonder how people got along years ago before the world was more specialized. Modern medicine can be such a blessing, but there are times.............................
Good luck with the new doc, sounds like a guy that likes to learn!!!Irish ;D
Tiny update: My post about this on my blog made it into this week's Grand Rounds (a round up on the best in the week's medical blogging). More people will know that this goes on! Here's a link if you are interested: http://blogs.acponline.org/acpinternist/2009/06/grand-rounds-at-acp-internist.html (It's near the bottom by Novel Patient)
Lauren
Well done! Let's hope some of the medics who read this understand what it's like to be a 'novel patient', and alter their practice to accommodate our many needs.
Kathyx
Lauren
Talk about being knocked down and then getting right back up. I am so pleased for you, i will read up on the blog, but well done you.
You take care of yourself.
Loulou