Re: Just found out yesterday
Hi Gilders,
Thanks for being supportive and sorry for what you have to go through w/your kidneys.
I'm feeling better now, I just had a really shocking episode and passed out for a while. My kidneys have been (thankfully) untouched which was why the pain was so concerning, but it's down to a 3 now where it was a 9 a few hours ago.
I'll do what I can to schedule a maybe biopsy, that's a good idea
Re: Just found out yesterday
Quote:
Originally Posted by
Alysia
Welcome to the forum, howard. Thanks for sharing your story.I hope that you will soon get diagnosis, treatment and start getting better.
Sinus/ nose biopsy for WG can be false negative (it means that it can tell that you dont have WG, when actually you have). I had it twice, each time they took about 6 sample from my bleeding/ crusting nose and the pathology results were negative for wg. I have wg.
So my advice is not to count only on the nose biopsy. Did they check your C-anca and pr3 ? They can also come as false negative but if they (and the nose biopsy) are positive, then they can give you diagnosis.
As far as I know, a WG expert can recognise WG in the lungs CT.
Are your kidneys ok ? How much is your creatinine ?
Hemoglobin is low usually during a flare. Crp and ESR are higher then the normal.
In my case they didnt took biopsy on time because of ignorance. But they did case conference with many docs. It can be a good way without the risk of lungs biopsy.
Hang in there. A bit more and you are on the way to feeling much better.
Alysia,
Welcome to the group Howard
I am new also and probably the one with the most questions out of anyone. Have so many doctors involved is great! it's just not ONE dr making this decision so it can put your mind at peace a little bit.
I am only going by what one dr said (from symptoms and blood work) My C-ANCA was right. Not sure how high is high, but it was marked as being high. along with two other markers I was told.
I have found in this group it's OK to ask anything at all, so many people on here with more experience then the doctors.
Wish you luck and please keep up posted.
Sue
OK, this is the part I find so frustrating!!! That a biopsy can come back neg and back at just going by symptoms. I keep saying to my self, this has to be wrong and just maybe I have something else and they don't have it right. Denial for sure. Then think wow, if I am taking all these med's and then I don't have it what next. This is what family is putting into my head and making me wonder how do they know 100% for sure I have it. But, I just had to believe in my doctor and do as she says. Just so hard. Wish I had a magic wand for all of us on here and make it all go away.
Sue
Re: Just found out yesterday
Thanks God your pain was over, Howard. If you are coughing a lot, the pains might be the result of the coughing and not necessary the kidneys.
Do you know how much is your creatinine ? Did they check your urine ? Do you have any labs results yet ?
I agree with gilders that it is better to wait with the pred. I cant remember how much pred I took while I had my nose biopsies (many years ago) but it is possible that they turn out negative because of the pred. A maybe-lungs-biopsy is a good idea in case that the nose biopsy will not help.
Sue, only nose biopsy can be false negative. Lungs and kidneys biopsies are accurate. Well, also colon biopsy for vasculitis is problematic and can be false negative.
Also, as far as I know, C-anca is positive only in vasculitis and in Crohns' disease. So once it is positive, one cant ignore it. C-anca can also be negative and one will still have wg. Not all weggies are anca positive.
I understand that it is not easy, to say the least, to accept being sick in such a disease. I know the fears. Faith plays a major role for me in my handling of my sickness, after all this is God's will for me; but since the forum rules dont allow discussing of religion I will stop here.
Re: Just found out yesterday
Hi Alysia,
I agree w/the faith sentiment.
I haven't had much of a cough just shortness of breath (how much is from pain vs volume idk, it just hurts). I don't think the masses are IN my lungs, I think they're on the outside of my lungs. I have a lot to be grateful for.
I'll ask about my creatine level tomorrow, I only took the urinalysis and bloodwork on Friday.
My left kidney still hurts a little but it's not extreme like it was, but today I woke up with my eyelids a little swollen and droopy. I think I'll wait til tomorrow to have imaging done since I don't think the ER can really do anything about it except take some scans and I'll need a specialized doctor. An ER visit just for some imaging seems a little wasteful as I have the feeling I'm going to be spending a lot of time in the hospital because of this :(
The eye problems aren't all that surprising seeing how traumatized my sinuses are from this (constant lesions, bleeding, and bloody "crap" coming out of them). I have a little headache but what can I really do until I see a doctor tomorrow?
I know if I go in the other room and take 2 prednisone I'll feel good enough to go to work in the morning, that's the hard part. I just have to wait this out for another day.
Re: Just found out yesterday
Hi Howard and welcome. I'm glad you found us.
Your symptoms sound all too familiar. The scalp hurts so bad, that you think each strand of hair also hurts.
I am one of the lucky ones that received a positive WG sinus biopsy, however this was 5 months after being diagnosed by symptoms and blood tests, yet they still didn't start any WG treatment until it was confirmed via biopsy.
I then had a 6 week wait to receive the biopsy results and during that appointment I was put straight into hospital because of blood in my urine.
At this time they started the long awaited treatment protocol, and I still remember clearly, by day two the pain was gone. Wow, the first thing I remember clearly was that the water from the shower no longer hurt my hair.......and I could wash it easily, and brush it.
Try not to stress too much, and know that most times you are not in any immediate danger, but if symptoms worsen, you can go to the ER.
In regards to the bloody nose, it has been 8 years for me, and a year and a half in medicated remission, and I still get daily crusting and blood noses, but nothing like before treatment when those big slimy bloody slugs were being produced.
All the best of wishes and pain free hopes being sent your way,
Take it easy (remember no stressing) and .........