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Discussion Starter · #1 ·
well I went to the rhemo Friday.

During the night we lost power (maybe you heard the northeast got some ice storm and about 800,000 people are without power) so I got up with no power, drove to my mom's who is in same town as my rhemo appt. and as soon as i got there no power ! Went there to take shower. Oh well. Ended up getting power on Friday night thank goodness. It is cold. But so many others are wtihout still and will be without for days.

Anyway, brought to his attention:

you said 800 protein and it was 80
his response is someone called and said 800 then when it came in it said 80. That is a lie. I am the one who faxed it to him ! No one would call and tell him anything about it !

Anyway, the sharp pains in joints, feeling ill during the night, all the other symptoms...he really doesn't say this is why or that is why. Maybe I expect too much.

But he said up the Immuran to 150 rather than 100 and get on Prednisone. I brought to his attention about the problems and the tapering off as slow as I did could not do any slower and blood pressure too low and stayed on couch for 3 days. He said then lets not do it. Let's just up the Immuran but that will take longer and see you in 30 days.

I asked about urine now 2+ protein, and went over how I did test. He said do another one as that one was not accurate because of me. I asked why is there all that other stuff always in my urine, like mucus, blood, etc. and he said I don't have the answer to that.

The swelling in my knuckles and i say that my pointing finger is sometimes non functional and causes great deal of pain. He checks no response.

Just at the end we need to up the Immuran and discussed the Pred. Do I expect too much or do I just sum it all up to a flare and not much to say except up the meds?

Told him about the EKG he says there are more accurate tests. I was suppose to call gp that day but the power was out and their lines were down. My blood pressure was good. He said heart sounded good.

So I will do the 24 hour urine and when the power is up will contact that doc to see about the EKG and such.

Oh well.......like I said maybe I do expect this whole speech and this is why explanation but also think that no one else probablys get such either.
 

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It is disappointing and frustrating to go to a doctor and really not get much for an answer for various problems/concerns. Even with a lupus diagnosis, and having that as an explanation is sometimes not enough of an explanation. I have to say I've had a few very similar appointments where you go in really thinking you'll get an explanation/solutions/new ideas and walk out feeling like you know next to nothing more and barely have more of a plan of attack than before!

Hope the next 24 hour test comes out better for you this time with no concerning results, and if not, I know you'll be on top of it and making sure you get the appropriate care.
 
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