View Full Version : Is this progress, Im not sure

12-29-2007, 09:30 AM
My first set of bloodwork came back yesterday. My white blood count was "perfect" so no infections, my "lupus test" was negative, as was every other test he ran except the SED rate test, which was very elevated. He said I don't have lupus, as if he really understands how to know that for sure. I was already set up for a holter monitor for next week to see about the arrythmias.

Then he said we could try to treat the symptoms, and to take ibuprofen. When I heard that I remembered something about it being a bad thing, or at least not helpful for someone with lupus to take ibuprofen. So, I brushed past that. Then he said he could refer me out to a specialist, I said what kind of specialist, and he finally said the word I wanted to hear, Rhuematologist. I jumped on that and will be referred this week.

Then he said to let him know of any changes or if there is anything new in my symptoms. I hesitated a bit, because at the time I was having chest pain radiating into my neck and shoulder and back, and felt awful, but, I have no faith in him believing me anymore, and knew he would just tell me to go to the ER. So, I just didn't tell him about that or about the numbness and pins and needles in my left leg.

I waited it out and by the time I went to bed it was basically gone. It does worry me, but, I have been dismissed so many times when they haven't found anything wrong, just my old mitral valve deal, and chalked it up to either anxiety or musculoskeletal inflammation.
I wish I could hand them my body when I get these symptoms and have them walk around in it for a while so they would know I am not imagining this.

Anyway, I have no faith in the holter monitor, but, will go through with it just to satisfy them. What I need is another echo, but, will wait til I see the rhuemy to get that arranged. I am looking for another primary care doc, so, who knows, maybe I will find someone who actually knows something about lupus and doesn't think they can make a final diagnosis on one set of blood work alone, and this when he never even examined me or asked me to discuss my symptoms. I handed him my documentation and have no idea if he ever read it, but, judging by his lack of concern, he either didn't read it, or doesn't believe it.

12-29-2007, 10:35 AM
Unfortunately, doctors who are not learned in rheumatic diseases have the aggravating habit of dismissing us, misdiagnosing us, or telling us that it is all in our heads. I am happy that you are finally going to see a rheumatologist. Make sure that you take your list of concerns to him also and tell him that you want to go over that list with him (you don't want him to read it while you are gone, you want to read it to him and get his responses while you are there!). Ask about the results of any tests and what they could mean and ask to be treated for your symptoms with medications that will truly help (meaning, something more specific than ibuprofen). Weather or not you are experiencing the arrhythmia and chest pains, make sure that you tell the rheumatologist about them!
Please keep us posted. This does sound like a step in the right direction, however.

Peace and Blessings

12-30-2007, 04:01 AM
Wow - that is SOOOO frustrating! You are right to look for help from another doctor. Someone who understands autoimmine diseases is the key - the rheumatologist could be that person. I hope so. When I look back over the years (and the gigantic size of my medical file!) I realize I've been dealing with this for a long, long time. If I hadn't ended up in the hospital with a womping big case of unresponsible pericarditis and had a sharp young doctor who spotted an old record showing an elevated ANA, I might still be undiagnosed. We shouldn't have to work that hard to get the care we need. There just needs to be more recognition of the disease in the general practice world. Sigh.... where's Dr. House when we need him? :lol:

12-30-2007, 01:02 PM
Dr House won't be much help coz he ripped up his lupus book to stash his pain meds. :)

01-02-2008, 08:00 AM
Is there even such a doctor like him? i mean i would love to have a doctor that will stick with me until they figure out what it is that is wrong with me. my poor father has been dealing with this pain and suffering for years and my biggest fear is that i will end up just like him if not worse because i am already in pain! I see him getting worse day by day and all i can do is think that will be ME!