Blood Tests - what to check

[vdub]

Have to agree with Don. This is a wegs site and not a social site. Typical site members are people who actually have the disease. Since none of us are doctor's, members need to know that any advice given is coming from a basis of a member's personal experience and not guesses or googles. Sometimes we need "rahrah", but most of us are beyond that and approach the disease in a more matter-of-fact way. We don't necessarily want to keep the site purely technical and we do stray from time-to-time, but generally we keep on track.

Anyone is welcome to participate on the site, but if you don't have wegs, you should limit your participation to the "random thoughts" area. That's why the area was created and we look to forward to seeing your participation in that area.

[drz]

I think buck up or cheer up messages or expressions of sympathy and concern can often be done best with a private message to the person intended since they are often just intended for one person. Info that might apply or be useful to many should be public IMHO.

Have to agree with Don. This is a wegs site and not a social site. Typical site members are people who actually have the disease. Since none of us are doctor's, members need to know that any advice given is coming from a basis of a member's personal experience and not guesses or googles. Sometimes we need "rahrah", but most of us are beyond that and approach the disease in a more matter-of-fact way. We don't necessarily want to keep the site purely technical and we do stray from time-to-time, but generally we keep on track.

Anyone is welcome to participate on the site, but if you don't have wegs, you should limit your participation to the "random thoughts" area. That's why the area was created and we look to forward to seeing your participation in that area.

[Debbie C]

Ha ! Ha! with all that being said,I forgot what the topic was ! Oh yea bloodwork. I don't get it either, mine seems to come back good all the time ( knock on wood ) but there are days where I just feel like I am all out of spoons and my nose feels like some one put ice cubes in it. I was going to an ent tomorrow but cancelled since I will go to CC in a few weeks. And go see my optomologist on the 29th cuz my eyes have been so blurry ( but not red like yours Alysia ).Oh well if its not one thing its another just gotta keep on going.

[Helen]

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]

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]

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.

[seied]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

[Helen]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

[seied]

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

Weg's/GPA should be managed treated by a rehumatologist.
In my case, Anca was used to diagnose me for the first time. I'm too new, I'm on treatment and too soon to know if I'm in remission.
if you're in remission and suddenly find yourself afflicted by an unexpected symptom or relapse of GPA, persist with your doctor and have them move your appointment to no more than a few days away. You don't have the luxury to wait. Secretaries/assistants don't know much. Last resort, simply show up without an appointment.
Again, make sure that you have a rheumatologist and that he/she knows how to treat this disease.

Ed.

[drz]

Weg's/GPA should be managed treated by a rehumatologist.
In my case, Anca was used to diagnose me for the first time. I'm too new, I'm on treatment and too soon to know if I'm in remission.
if you're in remission and suddenly find yourself afflicted by an unexpected symptom or relapse of GPA, persist with your doctor and have them move your appointment to no more than a few days away. You don't have the luxury to wait. Secretaries/assistants don't know much. Last resort, simply show up without an appointment.
Again, make sure that you have a rheumatologist and that he/she knows how to treat this disease.

Ed.

There are many GPA experts that are not rheumatologists and these are usually listed in the Vasculitis web site. The advice to find a GPA expert or some one who is at least familiar and experienced in treating GPA has been the most often advice given any new member. It is also very important that your treating doctor be some one you feel you can trust. This usually involves listening to you and understanding your concerns and being able to explain medical things to you or who ever directs your health care in a manner you can understand.

If you can't find a recognized GPA expert, I think your best bet for getting adequate care is usually a rheumatolgist at a big university medical school since they are more likely to be aware of research in treatment.