Discouraged for sticking up for myself.

[Morganslone]

Do you ever get discouraged when a doctor isn't supportive of you wanting to be informed on your condition and trying to have a say in your treatment? I'm starting to feel like there is something wrong with me or I'm a difficult patient because I'm questioning things and because I say when something doesn't seem right.

I don't want to be a difficult patient, but I'm starting to think no matter how polite I am that questioning what I'm being told or complaining when things don't seem right to me I am always going to be labeled hard to work with.

[Wittycjt]

That's their insecurity, don't take on that responsibility. As long as you are being polite and respectful, the best patient is a well informed patient. If their ego is fragile maybe they need to question their own knowledge of what you're asking. Best wishes, Cindy in NJ

[Morganslone in reply to Wittycjt]

Being polite but questioning got me dismissed as a patient today. I don' fault him for how he handled it but I don't know how I could have acted any differently. I was respectful, tried to work within their system and was just told the person in question was uncomfortable treating me now.

[Wittycjt in reply to Morganslone]

Did they actually say you were being dismissed or did they imply that hoping you would stop questioning things?

[Wittycjt]

Is this a "specialist"? Where are you from?

[Morganslone]

I was told he was no longer comfortable treating me and that he would be either referring me to another doctor within the system or another doctor of my choice.

[Morganslone]

He is a hematologist and I'm in Tennessee.

[Wittycjt]

Do you feel comfortable with someone else in the practice, did they offer you someone who is more comfortable answering questions?

[Morganslone]

I'm not comfortable with aspects of the practice. I've been there less than 6 months and the they've missed calling me over one critical value totally, didn't contact me until two days after I had a critically high value. It's very difficult to reach the physicians. I think the hospital is just too large for my comfort level. My husband and I had been debating leaving anyway, the fit just wasn't there, but I'm positive for other patients it could be a good fit. Yes I am being very tactful with my words here.

But even with that, I had always been polite and kind. My questions were never accusations, just trying to figure out how to make the system work and how to work within it. I felt really bad for him as he told me because he was shaking. It wasn't a stellar day. My last draw in their office (about 2 weeks ago) went so badly that my arm is still bruised in two places, the others that have drawn me since then (i've went to another lab to be drawn) have told me they can't draw from that arm at present, and he sent me to my Vascular surgeon because he was afraid I had set up a new DVT in my arm (thankfully I had not)

[HollyHeski Administrator in reply to Morganslone]

How you are being treated is very unfair, I could express this more strongly but would get carried away!

You are right to question and follow your instints.

I agree with APSnoFab totally, good advice to follow. xx

[Wittycjt]

Dr Colleen Morton is suppose to be a new "APS specialist" hired at Vanderbilt could this be alternate possibility?

[katepscot]

No one has ever given me any information on my APS ? Just take an aspirin daily ? No one ever checks my blood. I was diagnosed by Dr Hughes himself, but because I saw him on a private level my gp is the only person im under now.

[Lure2 in reply to katepscot]

Hi and welcome to our friendly site for HS/APS!

I suggest you put your own new question on our site and tell us about yourself and how you were diagnosed.

Best wishes from Kerstin in Stockholm

[GinaD]

Have you heard or read about the zebra analogy? Most doctors are trained to treat, and expect all their patients to be, garden variety horses . But we are zebras. A doctor can only be a good doctor if he or she is very self-assured. And treating a zebra is risky. And the need for self-assurance causes said Dr. to project their discomfort on to the patient. This is one reason why it is very helpful for us zebras to consult with a zebra doctor – in other words, a doctor who has experience treating APLS.

I was fired from my former doctor's practice back in 2004. I had just discovered that I was gluten sensitive. I went on a gluten-free diet and blood work showed, that while all my rheumatoid factors went from skyhigh to normal, myLDL numbers went from low to high. My doctor wanted me to start taking cholesterol meds. I pointed to my traditional low cholesterol numbers and suggested that maybe the spike in cholesterol was due to my body becoming more efficient absorbing nutrients. And that with time perhaps my body would stop absorbing more cholesterol then it needs. I wanted to wait six months, repeat the test and if the numbers were then still high, to start the meds then. She explained that her practice was rated according to how many of her patients were compliant with treating their high cholesterol. If I refuse the treatment, her practice ratings would decline and, therefore if I refused the treatment she would discharge me as a patient.

I was flabbergasted. And angry. But I left her practice, and six months later a follow-up blood test showed that my cholesterol numbers were at what one doctor called the "walk on water" level. She was wrong. But she also was enslaved by criteria designed for horses, not zebras.

[Wittycjt in reply to GinaD]

Again, right on point!

[MaryF Administrator]

Hi join the club! So many of us have done this and been out through to the other side, never feel bad about being open minded, informed and assertive, it is necessary 100 percent with this condition! MaryF