Feeling very bad

[carrottop50]

I am having a heck of a time breathing... I had a chest xray a week ago today and they didn't see anything... but my breathing was not as bad as it is today and each day it seems to get a bit worse. I was shopping and while just walking in the store I became so very weak and so short of breath and sweaty I had to stop and couldn't finish my shopping thank goodness my husband was with me. I am coughing my head off also and it isn't a cold kind of cough at all more of a very dry cough. The doctor gave me an inhaler the other day when I was into see him. It helps some but not that much. He told me I had the flu/the crap that is going around. I tried to tell him just how bad I was feeling and let him know it was not the flu... I don't know how to get through to the doctors. The fatigue is so darn bad. I feel just like I did about 10 years ago and at that time I ended up in the hospital and about died... and they didn't know what was wrong then. They told me that my lungs were filled with what looked like white fluffy stuff.... the pulmonologist said he had never seen a set of lungs like that before and he didn't know what it was. Later he just went and dx'ed it as pneumonia. The bad thing is I live in a very small town and maybe the doctors here don't see the rare diseases as much as those doctors in the big cities.
I was wondering if maybe my blood work showed something that time when I was in the hospital that would make the doctors understand how bad I feel now. Because my blood is slow to tell them how bad I feel until I get really sick. Maybe I could get those results from like 10 years ago... I was told that my blood test were not good back then and that was why my doctor put me in the hospital. I know they did a lot of blood tests back then. Just wondering if they keep paper work that long on file. I just wish I would of ask for some of the reports back then but I didn't know this illness would hit again.

[LisaT]

Do you get regular bloodwork? If so maybe the drs can take new blood and compare to your recent tests? The shortness of breath sounds worrisome... Do you have a rheumatologist or other specialist you can see.?

[cjhnsn29]

If I over do my walking or activities, I have the same problem breathing wise. When I had the flu it was extremely worse.it's normal for me and they just gave me an inhaler also. They are requesting a sleep apnea test. They said that might have something to do with it. Will see. Just have them keep up with your blood test. C.J.

[Pete]

If you live in the central US, you may want to get tested for the enterovirus (sic) that is going around. Its symptoms are similar to yours.

[JeanMarie]

Blood clots are sometimes associated with wegs. Chest xrays & regular CT scans won't show a pulmonary embolism. A blood test called a D dimer can help but isn't 100% accurate. A CT scan with contrast dye is normally the test used. Folks with kidney problems can't use dyes so a V/Q lung scan is done for them. You sound really uncomfortable, maybe you could at least have the blood test to start? Hope this helps.

[gilders]

Blood clots are sometimes associated with wegs. Chest xrays & regular CT scans won't show a pulmonary embolism. A blood test called a D dimer can help but isn't 100% accurate. A CT scan with contrast dye is normally the test used. Folks with kidney problems can't use dyes so a V/Q lung scan is done for them. You sound really uncomfortable, maybe you could at least have the blood test to start? Hope this helps.

After a short stay in hospital early this year during my latest Wegener's relapse I ended up with blood clots the full length of my leg and right up to my abdomen.
Since then I've had a chest CT scan (no dye due to kidney failure). As there was no dye the pictures weren't 100% clear, but they were 90% sure I had numerous blood clots (pulmonary embolisms) in my lungs. If it's not Pulmonary embolism it could be Wegener's related. I have been waiting for 3 months and still no date for another CT scan (NHS is SO slow). In the UK kidney failure patients can get around the contrast dye situation in the following way - You have IV fluids for about 6 hours, have the scan, then back on IV fluids for a few more hours. I went through this routine when I had a seizure (which I only ever get when I'm having a Wegener's flare) and needed an MRI with contrast brain scan. I was allowed home the same evening. I have been told that after the chest CT with dye I would need to spend the night in hospital. I don't know why the chest one requires me to have an over night stay, although it is a different hospital, so maybe just different procedure at that one.

I was wondering if you could tell me what a V/Q lung scan is? Maybe I could request it when I EVENTUALLY get my appointment, if it's more preferable to using dye.

[Tom]

I had a nasty cough, sinus troubles and then started coughing up blood, I was SOB all the time, ended up I lost 2 lobes of my right lung and a dx's of COPD. A couple months later I had what I was told was pneumonia. I was hospitalized treated a few days and sent home a couple months later I had a rash and was ill, the rash was the clue after complaining of all kinds of problems after my colon cancer in 2006. It took 5 years to find my wegs and it reared its ugly head and nearly killed me with in 2 weeks. Prior hospitalizations were supposed to be peunmonia but wegs does present as peunmonia in the lungs. It was too late for my lungs and it damaged my kidneys also