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.

[JeanMarie]

Gilders, This is from a Mayo Clinic site:
V/Q lung scanThis test uses small amounts of radioactive material to study airflow (ventilation) and blood flow (perfusion) in your lungs. For the first part of the test, you inhale a small amount of radioactive material while a camera that's able to detect radioactive substances takes pictures of the movement of air in your lungs. Then a small amount of radioactive material is injected into a vein in your arm, and pictures are taken as the blood flows into the blood vessels of your lungs. Comparing the results of the two studies helps provide a diagnosis.

I think the V/Q is an older test (not sure) & the CT with contrast is preferred. (Not sure of that either) I think there are drugs to protect the kidneys if given before the test as well. I had the V/Q because I was in the emergency room & that was quicker. I was nervous about the radiation but the technician told me she had worked in that department until she was nine months pregnant. She said "Believe me, I would never have been here if there was any danger" I always remember that-it was a comfort to me.

Hope this helps!

[mrtmeo]

Hi Gilders,
My mom just had a V/Q and it doesn't really show much when compared to the HRCT scan.
I asked if it can show nodules and they said no.
It just shows lung difusion abnormalities which can also mean clots, nodules or tumors.
There is a lady who did a video for the vasculitis foundation that had many nodules in her lungs and was diagnosed with bilateral lung cancer until they did a lung biopsy.
They found that all those nodules were blood clots.
I wonder if all the nodules in vasculitis folks lungs are nothing more than blood clots.

[Velma]

I had similar breathing issues and it turned out to be the scaring of the bronchial airway.. maybe you might have a bit of that too.. Go to a bigger city and hospital that knows WG. I travel at least 2 hours one way to see someone but most of the time it is 3 1/2 hours to Pittsburgh. I live in central WV and I am trying to get into the Cleveland Clinic which is 4 hours away. It stinks to travel that far but if they know what they are doing then it is worth it. Good luck and keep us posted. Praying for you.

[Allisonquast]

How are things now carrot top?

[carrottop50]

My doctor thought maybe I had heart attack because of EKG, shortness of breath and high blood pressure so ran all the heart tests.... stress test, echocardiogram, and carotid ultrasound. All was fine. Now he tells me I have allergies.... Going to rheumatologist as soon as I can get in and talk with her.... and I think I will list all my symptoms and just give her the list and go from there.

Here is my list of symptoms: Nose - right side runny plus sore on inside, Pain and burning in sinus area -can be very painful at times, Pain in jaw area, Ears- fullness and losing hearing 25% both ears, Right Eye has pain, burns and waters a lot, Cough, Tightness in chest, Shortness of breath, Throat seems to feel swollen at times, Hands and Feet ache and swell, Rash on neck, under chin and forearms, Have a few blistery sores, Get purple blisters in mouth off and on plus inside lips seems to be touchy/sore, night sweats, Fatigue and weakness, poor appetite. Kidneys are stage 3. Had xray of chest and it shows - inflammation (the first time doc told me about xray he said lungs were fine...but then the 2nd appointment he told me inflammation).

[drz]

Sounds like misery. Hope they sort it out and get you some relief soon. Is your Wegs active and how are rest of your labs?

[Debbie C]

Sounds like a flare up of wg to me. Do you have an ent that knows about wg ? Some of it may be the change of season. I live in Ohio and was having problems breathing and had an appt. with my pulmy and they did a pft and part of it was above normal and some was below.they had me use a neubulizer and retook it and it didn't change things. The report I got from the lady doing the test said it was partly due to my copd...which I have always been told I have ,but after the test when I spoke to the pulmy and he was reviewing my lastest ct scan he said my copd was very slight and that I had asyma ( sp ? ) which I NEVER was told that before, I also have 3 tiny nodules in my lungs that have gone unchanged for a year so he wasn't worried and said he'd see me next year. But I recently went to Fl. for 2 weeks and my breathing was great. I would walk about 2 miles everyday with my sis but know that I am back in Ohio same thing again. So it may be a combo of things but definitely get your monthly bloodwork and always ask them for a copy. I have mine done at the hosp. and they put my results to my chart on my email, Maybe you can see about that so you can always go back and compare. Hope you feel better soon.

[carrottop50]

I also live in Ohio and weather might be some of it too. I have not been dx'ed with Wegener's but one of my doctors thought I had wegener's because of my symptoms.
Here are my blood tests that show a flag on them... and some have been this way for about a year now. Most are only a few points high or low except for the CCP test and it was 130 and it should be 0 to 19.

Red Blood Count L


Blood Urea Nitrogen L


Red Cell Distribution Width Diff H


Creatinine H


Blood Urea Nitrogen H


Estimated GFR (MDRD) Non-Af Amer L


BUN/Creatinine Ratio H


Neutrophils (%) (Auto) H


C-Reactive Protein Extended Range H


Cyclic Citrullinated Peptide IgG A H


Vitamin D 25-Hydroxy L

[LisaT]

I don't know about all of those blood tests but your symptoms certainly sound like wegeners. Do you have a rheumatologist? Or can you get to a vasculitis specialist? Those symptoms shouldn't be untreated.

[mrtmeo]

A kidney biopsy can determine if it is vasculitis or not.
Get this treated immediately, because the kidneys can fail very quickly.
If u want to look it up, do a search of rapidly progressing glomerulonephritis or pauci-immune crescent glomerulonephritis.

[kaysee]

mrtmeo and LisaT are correct. I have had many of the symptoms you describe as well. It sounds like WG to me. I went to a rhuematologist. The test that led to diagnosis was C-ANCA. Because one of my symptoms was loss of kidney function my kidney doctor ordered a kidney biopsy. The kidney biopsy can visually confirm the presence of WG.

Karen, dx'ed April 2014

[mrtmeo]

All the time that my mom has been p-anca positive, her Neutrophils were always high and her lymphocytes always low.
Her creatinine would go up and down and so would her C-rp and sed rate and rheumatoid factor.

[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

[carrottop50]

Had another episode this morning...We were getting ready to go out for breakfast and I was in bathroom combing my hair... all of a sudden I got this terrible feeling again. I get very weak... nauseated, then I have this feeling that starts at the back of my neck then goes to the top of the back and sides of my head ... feels like strong needles and pins working their way up to the top of my head... I seem to get very hot... start sweating badly.... I had to sit until it was over... it lasted about 2 or 3 minutes...then once the needles and pins reach the top of my head that feeling starts to slowly go away.... but it leaves me weak the rest of the day. When I get this feeling I am usually walk through a store or moving at least.... and when that happens I get very short of breath...but today standing in my bathroom I didn't seem to get the strong shortness of breath with it. Sometimes when I get this feeling I also get sinus pain/burning and my ears get that fullness feeling. Plus I couldn't get to sleep last night didn't fall to sleep until about 5 am... my sinuses were burning and I had some shortness of breath so use nasal spray and inhaler. Even my throat seem to feel a bit swollen. Tightness in chest. Any of you ever get this or is this something different then Wegener's????

[Dirty Don]

Get thee to a doc...it's not that it is WG or something else, it's that WG can imitate so many symptoms it should always be checked first. Best to you.