My appointment went badly.

[zizzcat]

Hi Everyone...

I hope you remember me. I'm the one who has that yucky scabby mess going on in her nose.

I don't feel we'll enough to go into details but my rheum doc appointment went very badly. I felt as though I had done something wrong and was being interrogated. In essence, he discounted the letter from the ENT that advised him to consider Wegners or treat me as though I had Wegner's, my blood work is too good ( but high CRP), and he added that there are "other things" (like snorting cocaine) that can cause perforated septums and nasal scabs. Then he added that some of my meds might cause the fatigue I have and started in on my psyche meds and mental illness. I stood up for myself on every count and at least did not walk away ashamed for being treated like I was making all the symptoms up. He did agree to raise My Imuran from 175-200. He ordered more tests. I expressed that it is a very sad fact that I have to get much sicker to ever be able to get better. He shrugged his shoulders throughout the whole consult.

My husband is starting a new job with decent and affordable medical insurance. As advised by some of you, I will look for an expert in Wegner's in the area.

Am feeling pretty sick and am trying not to let this upset me.

Hope

[chrisTIn@]

I´m very sorry to hear this. Hope you ´ll soon be seen by a real Wegs-expert that can help you out. It's a good thing you're trying to keep your head cool. Stress is very bad for Weggies, as you know. Hold on!

[me2]

Hope , I remember you. Many of us here have been dealt the same hand as you have. I'm so sorry to hear you get treated this way. Just know that we understand and support you. Whether you have Wegs or not this doctor is not treating you right. These drug allegations are outrageous. If I were you I would go to his boss (if he has one) and let him know how you are being treated. If he is willing to accuse you of such things then offer to take a test to see who is abusing who, and what. Ask that the doctor be drug tested for doing such a thing to you. Suspicion haunts the guilty mind.
If they are not willing to test you then they owe you a big apology.
Of course you may be feeling too ill to do that, which makes my blood boil even more.

You are definatly on the right track finding a doctor with more experience with Weg- and not abusing patients. I hope that you can see someone else soon so that you don't have to get sicker to get good treatment. You are quite right. I've been through that myself and I don't put up with it anymore. My blood work shows zip and is not used to guide my treatment. I've been at this for over thirty years so I have some experience in knowing when I am sick even though I'm told I look 'fine'.

Will be thinking about you and hoping to get good reports from you soon. Don't let the bastards get you down. (excuse my language) Don't get discouraged. Rest and keep making the positive steps you are and you will get better.
I have, so many times I've lost count.

[NikkiNicole]

Wow, this all sounds so familiar. Every time I would end up back in the Rheumy's office, he would tell me that I am not sick enough. Even now, when he's resigned himself to the fact that I DO have this disease, he doesn't want to give me all of my medications because I'm not sick enough.
I am currently beginning to wage a battle to be seen by a Vasculitis Specialist at UCSF. I got him to agree I have it (ANCA was off the charts, ESR elevated, CRP elevated, platelets elevated .... all points to inflammation!) and now I want my insurance to pay me to see someone who might take this more seriously.
I am so sorry you have to go through this battle. After all I've been through I couldn't believe I was happy to hear the words that I have it. How can we be happy to have this?
I hope for you it gets better. At least, the treatment from the docs!!!

[annekat]

Oh, Hope, this doctor sounds so awful. I'm so glad you'll have access to good insurance so you can see a specialist. In the meantime, I'm glad you are on an immunosuppressant. But you so need and deserve a doc with not only knowledge about Wegs but a respectful and professional attitude toward you. I, too, have a doc who didn't think I had Wegs, though he was convinced by a call to my ENT, who had done a biopsy of my perforated septum while he was on vacation. I don't understand much about the biopsy except I got the impression he was taking bone scrapings from the perforation, which was in the bony part of my septum. He also did a biopsy of my swollen parotid gland at the same time, and I don't know which test, if not both, was conclusive in showing Wegs. In any case, good luck with it all, and don't let that doc make you feel insignificant or small. He is a real jerk to imply that illicit drug use could be an issue in your case.

[drz]

Hang tough! I think you did well but agree you need a better doctor where you feel heard and one you can trust with your care. Keep up the demands for better service with some one with more skill and better bedside manners.

[Alysia]

dear Hope,
I hope you will soon find yourself a better doc. I suggest you ask to get RTX as treatment. maybe even from this doc.
Is there any ombudsman? if there is, maybe you should write a letter about all this. we can help you here with the writing. you are not alone in this:hug2:

[zizzcat]

Thank you to everyone for being so supportive....I will let you know how things go.

I got some blood work done, but everything usually seems ok in that. The real damage can be seen in coincidental images of other organs that tend to show increased scaring.

More will be revealed....

Hope

[NikkiNicole]

I have the same problem with the blood work. Except for the inflammation, platelets and ANCA, my blood work was all normal. It's frustrating when the doctors only seem to want to rely on that.
We know our bodies. We KNOW when something isn't right.
I do hope they pull their heads out of that area where sun doesn't shine and help you!!!!