Blood Tests - what to check

**debra** · 01-14-2016, 09:12 AM

Pete, hi. Interesting, there's a special and expensive way to look at urine, and I tried getting my doctor to do it, but to no avail. There's a shock. I need to look at what its called, but its different than the usual. It's called spinning the urine, and has to be done on the spot. Then the casts found, and other indicators are measured and looked at with a special machine. I'll look later, but its an accurate way to test for wegeners,so why the hold off? Expense, I'm guessing, why else.... Deb.

**debra** · 01-14-2016, 06:29 PM

Above post, I believe is a centrifuge spin for urine. A special urine spin that is done within minutes. I will look into it, can't remember the original article, as it was back in 2012. This man's diagnosis was based on this alone, with symptoms. Negative biopsy, negative Canca. Kidney doc, spun his urine, listened to the patient aand treated. Ignore that extra a. Good kidney doctor! I saw one in 2012, and when I mentioned wegeners, she wrapped things up, stating its to rare! Rare my a**!!! Birdie, I think any med change, in dosage or med itself, will cause more symptoms until you're body adjusts to the change, or you're doctor goes back to the other regime. I mean simple stree can effect ya, so you can imagine what a med change can do? It's such a weird sucky sickness, with a mind of its own! Deb.

**darl-p** · 02-14-2016, 07:12 AM

I think that Pete's response was right on. "As always, how you feel is probably your best indicator of wegs activity."

Over the years I have had many tests and keep a spreadsheet of info. I have tried to correlate the info with how I feel. Not much good. I had all blood tests last weekend and all showed normal within guidelines. Yet .. lung x-ray shows possible pneumonia or weg flair and several joints have abnormal pain indicating a flair. My team of docs tend to be in-tune with the symptoms of a flair even if the blood test say different. Know thy body.. I keep a ready supply of 10mg prednisone on hand to combat the effects and have approval to self-medicate as needed.

**pwc51** · 02-15-2016, 01:18 AM

darl-p - I have found that I am aware of my flares before the bloods indicate anything! Sadly my team only tend to react to the blood results so there are sometimes a few days lost when treatment could have been started. Generally this has not been an issue but am conscious this may not always be the case!

**debra** · 02-15-2016, 01:55 AM

Wow, so awesome to see so many old members popping back in lately... Nice seeing you guys, and hope you're doing well... Deb...

**Titus3:2** · 02-15-2016, 02:51 AM

I agree with others;GPA has a certain feel to it.Birdie,I think Alysia ,and Bora bora Debra are baiting you.Now,back on course.

**debra** · 02-15-2016, 07:51 AM

Keith, ya we are, but isn't working... Its not working, is a feeling I've learned hard to just accept! In all areas... Acceptance is a pretty cool thing... Keith, hope you're good... I love reading you're posts... Deb... Not in Bora,bora as of now! Unfortunately!!!...

**Helen** · 01-25-2018, 06:26 PM

During one of my E.R experiences, which required admittance and isolated for 3 days to a room where there were no Drs. I was originally carried to E.R very sick, not lucid to be able to communicate. It appears E.R only ran the usual basic work up. No one would discuss my E.R lab work/results later. They evaded to ask me anything of my symptoms during my stay, but same time I was so heavily sedated that I could not get up to use the washroom. Even the much later follow-up to the ENT Dr. appt. at the same hospital would not discuss the results. Claimed "perplexed".

I do not have the knowledge to understand these results which is frustrating. i learned much later by getting my blood-work report that I had, (like many times before): elevated WBC in Neuts. and ABS Neuts, Echinocytes, Ovalocytes, very low Lymphs. high glucose level. The extreme one was very high "CRP High Sens." at: 110.5 (ref. range is <10.0). What is CRP?! I do not see anything of the word "Anca", and it appears they did not run a full metabolic panel. Along with this my basic 5mm "head" CT reported "Chronic inflammation in bilateral ethmoid and sphenoid sinuses.".... "cannot exclude infection in the mastoid" region. Next I was hooked up to IV of Narcotics, totally sedate to prevent me from being able to communicate. None of the Drs. sat down or discussed anything to me during this whole time.

Yet, with this data, all of the unseen Drs. reported to be "baffled", claiming to not see anything wrong to assess further. The Hospital otolaryngologist threw his report in my file that he "could not see anything wrong and there was nothing further he could do"(without any assessments!!) I was released with around 3 Antidepressant and anxiety/narcotic prescriptions which only made me much worse by giving me head zaps ON TOP of this ongoing illness. My suffering and pain of this continues to current.

Does anyone here have any knowledge or familiarity to having these SAME type of results? Your feedback would be so much appreciated to try help guide me out of this. Thank you - H.

**vdub** · 01-25-2018, 07:02 PM

No one on this forum is a doctor, Helen. All we can do is relate our own experiences which may or may not be like yours. Best advice is to do as your doctors say. They know best. I hope things get better for you.

**Helen** · 01-25-2018, 09:58 PM

Originally Posted by vdub

No one on this forum is a doctor, Helen. All we can do is relate our own experiences which may or may not be like yours. Best advice is to do as your doctors say. They know best. I hope things get better for you.

The irony is, I'm here "on topic", but yet redirected.
I totally disagree. That comment was aggravating and ignorant, to quickly jump into assuming that all Drs know best. I hear this phrase often from senior citizens where many don't even know what pills they're ingesting in their -A.M, Noon, Mid Aft. Evening. Bedtime pillboxes. You have no idea what has and had transpired in my life due to incompetent and unethical physicians who did/do not have the knowledge, causing further harm due to my prior naivety in trusting "to do as your doctors say".
Drs. are not Gods. So many here have tried in vain for years to seek a "DR" to listen and were in the wrong hands - No? This is where I'm at. Patient have the right to understand what the "best" Drs. are doing behind the curtain with the controls. To be transparently informed and understand their results/reports. If the Dr. does not know and it's not said, then what? We ask the public for support.
Communication is a very critical necessity for appropriate care.

If you read my post carefully Vdub, you will see there was no "advice", nor discussion at ANY time. NOTHING. This is just one experience of many. And I am unable to return to find out. Is this what Drs. do best? I managed to order the reports a year later to observe these findings. So, HOW am I able to follow or understand what some of these results/terminology mean, when it hasn't been discussed? Again, there's no Dr. Sure- go "google" it, but it's ambiguous. I came here in the hopes to gain some new knowledge and advocacy from others to help move forward, not just compare and share ailments as if in a nursing home. To provide my own input on certain subjects that may be beneficial to others which in turn be aware of what to ask their "best" Dr. next time.
Knowledge is key. I have observed some intelligent participants on the forum, with the possibility of some in the medical sector who may be of help to provide some input that's outside your discipline. Thanks. -H.