PDA

View Full Version : Chunks, Mucus, etc.



pberggren1
01-22-2010, 10:27 AM
I've put 3 pictures of some stuff that comes out of my nose and mouth on my albums in my profile. The picture of stuff in the sink is stuff that I blew out of my nose while irrigating and the stuff in the cup is what I coughed up shortly after. The stuff in the cup is darker and harder.

Brooke
01-22-2010, 11:10 AM
the stuff in the sink is very similar to what I get out with my sinus rinse too. Where does that stuff come from that you cough up? your nose or chest?

snooz23
01-22-2010, 11:18 AM
Unbelievable!! I had some strange some oozing out of my ears for many months, but nothing that looks like that Phil. I cannot imagine what all of you who deal w/ this aspect of wgs must have thought when it first started happening?

katwoman
01-22-2010, 11:21 AM
fortunately I don't cough anything like that up! Similar stuff in the sink when I do nasal irrigation to what you have but but the crusting is so much worse looking :-) these discussions maybe a little gross but I find it very informative

pberggren1
01-22-2010, 12:04 PM
Brooke, the stuff that I cough up comes from the larynx.

elephant
01-22-2010, 12:21 PM
I only get clear stuff, with a little blood. Wow, it is amazing that you can produce this stuff. So the arteries ( smaller ones the supply the blood) must bleeding and then form a clot and then it hardens. I probably means that the WG is still active.
I right now have stuffiness and ears feeling full. So annoying!

Jack
01-22-2010, 03:47 PM
The stuff in the cups looks like the stuff I used to flush from my nose only not as bad. I probably removed at least the amount in the second cup from each nostril. You say that this is what you cough up? Wow!

I've never coughed anything up that was too alarming, just a great deal of mucus, sometimes infected. In spite of the state of my nose, it did not seem to get down into my lungs or throat except when I had major bleeds.

Sangye
01-22-2010, 03:53 PM
Okay, I'm gonna go look at the pics. Just taking a moment to giggle about the title of this thread.

Sangye
01-22-2010, 03:56 PM
Alright, I'm back. Well that was less disgusting than I thought. Phil, I really have a hard time believing this isn't active Wegs. I don't remember what your docs decided (sorry-- memory is off lately).

Jack
01-22-2010, 04:02 PM
Agree!
I was only producing stuff like that before diagnosis and treatment.

pberggren1
01-22-2010, 04:23 PM
My rheumy said she doesn't think it is WG.

pberggren1
01-22-2010, 04:25 PM
Actually I think it may be WG now as well. I see my Rheumy on the 29th. I had all my regual blood and urine work done again yesterday so it should all be available for my Rheumy on the 29th.

elephant
01-22-2010, 10:23 PM
Phil, I commend you. You have it rough, then having to wait till Jan 29Th. Your a strong person! Thanks again for the pictures. It will be very helpful to all the other WG people out there.

Sangye
01-23-2010, 01:24 AM
Phil, take those pictures with you when you see your rheumy. I just can't believe that's okay.

It reminds me of when I was coughing up blood last summer and was hospitalized for "pneumonia' again. My Wegs doc couldn't see me in person and was sending messages through the pulmy and rheumy teams. Nothing like that had ever come out of me before-- not even when my lungs were full-blown hemorrhaging for 3 months at dx. A bronchoscopy showed alveolar blood, but not tons of it. They kept telling me it wasn't enough blood to be Wegs and after a week sent me home with a dx of viral bronchitis. My Wegs doc said ANY blood in the lungs of a Weggie with a history of alveolar hemorrhage is Wegs. He was right-- it was a flare and it was alveolar hemorrhage.

elephant
01-23-2010, 03:02 AM
I second that Phil. Sorry your going through this mess.

Lightwarrior
01-26-2010, 04:15 AM
I've put 3 pictures of some stuff that comes out of my nose and mouth on my albums in my profile. The picture of stuff in the sink is stuff that I blew out of my nose while irrigating and the stuff in the cup is what I coughed up shortly after. The stuff in the cup is darker and harder.

Cool pictures, the last one looks like what I was coughing up before I started the meds.

jeriorleans
02-04-2010, 01:07 PM
Okay, I wish I wouldn't have looked at that, although A.J. blows similiar stuff out of his nose and I saved it and brought it to the doctor with me.

Dumpy
02-05-2010, 12:47 PM
jeriorleans I also had a lot of stuff that came from my nose for probably 1 1/2 years. It is really tuff at times. My ENT took a lot of samples from my sinus and put me through several antibotics before he got it under control.
I put a reply in your mail box a few weeks ago.

Jackie
05-18-2010, 08:09 AM
A Big Hello

I'm new to all of this. Many thanks for putting up photos, very informative. My rheumatologist suspects WG. Have nose symptoms for seven years, nasal crusts that lodge under my uvula. In March '09 I started having pains throughout my body and am now haing further tests.

elephant
05-18-2010, 08:24 AM
Big hello back to you. Remember even though blood work comes back negative, it doesn't mean you don't have it. I say this because I was misdiagnosed. Have you talked to your Rheumatologist about seeing a Wegeners specialist to get a second opinion? You can look under the Vasculits Foundation for a Rheumatologist who specializes in wegeners disease. Are you taking any medicines right now? Fevers? Night sweats? Hope you get an answer soon!

Sangye
05-18-2010, 10:08 PM
Hi Jackie-- glad you found us! I second everything Elephant said. Nasal crusts plus body-wide pain sure sounds like Wegs.

Jackie
05-19-2010, 08:48 AM
Hello again. Thanks for the info. Not on any medicines at the moment nor have I any fever or night sweats. Lots and lots of blood work done, waiting the results and I am going for a nerve conductor test in two weeks due to the pains that are travelling around my body. I'm living in Ireland so I not aware of any Wegener's specialist here. How are you going on at the moment?

Jackie
05-19-2010, 08:57 AM
:)Hi Sangye

Thanks for the support. Hope to get an answer soon. How are you getting on with it?

Sangye
05-19-2010, 09:28 AM
I'm coming up on 4 years since diagnosis and no remission in all that time. I recently did a second round of rituximab and am hoping that does the trick. Aside from active Wegs for 5 yrs, I've had tons of complications. I have no idea what my body will be like once I am in remission.

I'm a chiropractor and am wondering why they're doing nerve conduction tests for migratory pain. It doesn't make sense.

I don't remember if we have other Irish members-- maybe someone can help you find a Wegs doc.

DEE
05-19-2010, 04:01 PM
hi Jackie im treated by a wg specialist who also worked in Ireland and did reasearch on wg' if you look at www.allergy.ireland.net (http://www.allergy.ireland.net) his name is dr mohammed abuzukouk just type his name on net and the clinic details come up there are phone numbers etc on the site hope this is some help at least they might be able to give you advice
i also know that he worked at st james hospital dublin and if you bring up his name there is a booklet he wrote for patients on wegners available i have a copy and my family friens and work friends found it useful because it is written plainly so we can understand. DEEx

DEE
05-19-2010, 04:08 PM
just looked booklet up its on mohammed abuzukouk site and is titled (PDF) 6553 Techrepharm Wegners Book DEEx

Jackie
05-20-2010, 10:07 AM
Hi Sangye

My rheumatologist didn't give the reason for the test. It was my first consultation so I was not sure what to expect. My GP says Wegner's can damage the nerves. Hopefully I will know more when I see the neurologist.

How do you cope with the pain?

Jackie
05-20-2010, 10:18 AM
Hi Dee

Thanks you so much for the help. Where do you see Dr Mohammed at the min? How did you get diagnosed?

The booklet is great, nice and simple.

Jackie X

Sangye
05-20-2010, 10:23 AM
Jackie, Wegs can definitely affect the nerves and many times a nerve conduction study is necessary. What I meant was that ordering the test for migratory pain doesn't make sense. Which nerves will they test? They can't test them all! Normally someone will have a symptom like foot drop and a nerve conduction test can be done on the exact nerve in question.

As you proceed with Wegs, it's very important to ask for thorough explanations of tests, results, etc.... I made a list of questions to ask when a doctor recommends any diagnostic test--even blood work. I think Andrew made it a sticky.

I just cope with pain. I don't take painkillers. I have a very high pain tolerance--scary high sometimes. I've learned to warn my doctors about it, explaining that if I say "ouch" something is really wrong. I usually don't show pain, either. I can sit there and tell someone I'm in excruciating pain and I look pretty normal. Just my quirks, I guess. :)

Jackie
05-20-2010, 10:39 AM
Hi Sangye

Thanks for advice. I explained to the doc that the pain is wide spread throughout my body with the exception of my back and hips. My GP says NCT could take some time to complete.

I too have resisted pain killers for the moment until I get a better picture as to what is happening to my body. It would appear that this is going to take some time but I live in HOPE.

Sangye
05-20-2010, 12:01 PM
Good for you-- you can't lose hope!

DEE
05-20-2010, 04:26 PM
hi jackie I see Dr Mohammed Abuzakouk in Hull UK It took from Dec 07 to May 09 before i was dxt
i had several problems many instay hospital periods but no one could work it out
my ENT reffered me to an Immunoligist who happened to be DR A and the first time i saw him i can understand what your say about body pain i could not stand him touching me and after a three hour session medical history and some tested he said he was 89% sure it was wg and started my treatment the same day
when i went back three days later he confirmed it was wg
dr A had been doing research in Ireland on wg for over ten years and he is very easy to talk to always explians things simply
talk to you as a person not just a patient if you know what i mean
regards the pain i use pain killers especially at the moment just dealing with blood clots but as Sangye said everyone of use is different
if you need them take them
hope ive been of some help DEEx

elephant
05-20-2010, 08:34 PM
I agree with you on that Dee, if the pain is not controlled then your life is basically living hell. People who don't have good pain control get depressed and have more stress in their lives and can't cope.

Jackie
05-21-2010, 06:47 AM
Hope is everthing.

DEE
05-21-2010, 07:09 AM
it goes back to conversation i had with hubby
hubbys first words when he comes in how are u today my reply always was Im fine not any more
who am i kidding him or me
what with chest pains joint pains and nose as sore as can be give my the painkillers i
if this is how it has to be just now bring it on
im afraid i tell it as it is now as i have learnt that im doing my self no favours by not saying as it is
hubby not daft he knows me inside out maybe i have taken a little longer to know what good for me since dxt wg
but willing to keep on learning
keep on nagging to always willing to sort things out if i get things wrong about this @@@@diease
better go to bed up early again doc appointment night all
DEEx

Jackie
05-21-2010, 07:20 AM
Hello Dee

This is of great help, thanks.

A doc who threats you as a person instead of a patient is a angel without wings. I know exactly what you mean.

How in the end were you able to establish WG? Do you have your pain under control now?


Jackie X

elephant
05-21-2010, 07:21 AM
Hope all is good, mention the chest pain Dee to your doctor. Best of luck. :)

DEE
05-21-2010, 08:08 AM
cant sleep cant settle get nights like this sometimes
jackie i had three nose ops when they took a biopsy also a biopsy from my leg when i had cellultus and all came back a suspious WG
these with many other symptoms headache swollen joints eye sight problems from pressure blurred vision double vision and blood test etc
but the main factor was when WG consult reviewed the past biopsy s himself he said there was no doubt i started treatment the same day
have since had kidney invoveiment and blood clots in right lung which i had four weeks ago hence stil getting some pain
Elephant yes i will mention chest pain as i worries me a bit some say it early days and some think it hould be better ! Im back at hospital that treated me for it on thurs pm
will keep intouch DEEx
ps going to try and go to bed AGAIN

elephant
05-21-2010, 09:53 AM
Hey Dee, don't beat yourself up about the trying to get to sleep. I have spent many nights trying to fall asleep "so frustrated" I usually turn on the TV, go on line, or pick my nose ( hee, hee). :)

jola57
05-21-2010, 03:25 PM
same here, just do what you have to to pass the hours. have a good and sleepy night.

DEE
05-21-2010, 03:58 PM
hi guys im awake again !!!!!!!! managed four hours sleep :) no guessing what i will be doing later today
it was the first hot day weve had in ages and yes hubby decided we would do the shopping
elephant have done all of the above !! at some time no were your coming from
thinking it was because pushed myself abit to hard thats what happens here at the sight on some warm weather
not good when nose and sinus playing up and breathing a bit ifffy :)
slow and steady today i think
thanks guys DEEx

DEE
05-21-2010, 11:52 PM
ok update still lacking sleep !! been to doc and he has signed me off work for another thirteen weeks have not been back since jan 11th :)
he said i have enough to deal with and to keep remembering my health more important DEE x
ok and ive had a vanilla slice :)

elephant
05-22-2010, 12:47 AM
Glad you are taking time off, need to recover. Ok, you had your vanilla slice....you might want to close you ears/eye's and nose. I made triple chocolate chip muffins and pecan pie! Oh my! What is wrong with me.....I want to make more yummy foodies. Too bad you all live to far for me to share. :)

katarzena
05-22-2010, 01:21 AM
It is not a nice to thing to see but yeah, I had it too BEFORE I was diagnosed. The first week I started taking pills it disappeared. My nose is now completely normal and I'm not even in remission.. So I don't know.. But I remember I had it for quite some time, I was shocked and it hurt like hell, my nose was full of it + bleeding constantly so I cried of shock.. But I got used it after some time lol

Jackie
05-22-2010, 06:19 AM
Hi Dee

Hope your feeling better soon. Hang in there.

DEE
05-22-2010, 03:38 PM
sleep at last ! just slept for eight hours :) a record for me ready for the muffins again Elephant
need to sort day out going for a night out if i can stay awake long enough
very warm here yesterday and played havoc with my nose to the point i had nose bleed which i thought had just about stopped
i find sudden temprature change plays a big part in how my nose is if that makes sense
going to get some ironing done while its cool
take care everyone DEEx