Dr won't test me for vaaculitis. What to do now?
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Hello my name is Matthew. I began having weakness in my limbs 4 months ago. I then experienced an inflamed esophagus, stomach ulcers, and an inflamed colon which was diagnosed by an endoscopy and colonoscopy. I have last 25 pounds since this all started. I am in pain and weak nearly all day everyday. My fingertips on my hands have become swollen and I can see veins that I wasn't able to see before. Just about a week ago I began having pulsations and pressure in my throat, ears (popping) and sinuses. I have headaches that are usually in the back of my head. I also have a pimple-like rash all the way down my right arm. I have severe pain in my kidney area as well. Anyways, I have had MRI's/CT scans of my head, neck, chest, and abdomen 4 months ago which all came back normal. I have seen a rheumatologist who ran blood work on me and said it looked good other than elevated enzymes in my liver. She now says based on my bloodwork I do not have vaaculitis or other auto immune diseases and she diagnosed me with fibromyalgia. I am not convinced I have fibro, because I have been on medication for it for a month and my symptoms have just become worse. I feel helpless because I can't see another rheumatologist for another 3 weeks and I am becoming much worse. What should I do now? ERs are useless for me because all they do is run more blood work then send you home. Does this sound like vasculitis to you all? And are angiograms helpful in finding vasculitis? I am worried it is attacking my GI tract and my liver. Now that i am having severe pressure/pulsations with from my neck up with headaches i am worried it has spread there as well. Thank you for your time.
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MattC13
Posted
So is a biopsy the only way to rule out vasculitis? My blood work showed very slightly raised ANA, normal hemoglobin, normal hematocrit, negative p, and c ANCA, normal white and red blood cell count, slightly elevated liver enzymes, slightly elevated CRP,and a slightly elevated actin antibody. Sorry for all of the info I'm just trying to understand the significance of these test results. My vascular Dr that I just saw yesterday was thinking about ordering an angiogram for me. I'm unsure if it is worth the Hassel or not. Thank you both for your great information and I hope all is well.
philtw MattC13
Posted
Hi Matt,
I wish it was that simple,.....the first time I had PAN it took nearly 9 months before they decided what it was........and then a kidney biospy and nodule biospy confirmed it.
the second time, 30 years later, it took a similar tim e(9mths) I knew what was happening to my body and steered the Dr's in Qatar in the right direction until I got a referral to a rheumatologist. After I explained my previous history he requested an ANCA test which confirmed I had GPA.......tat was becasuse i had upper respiratory issues (nasal) and begin coin lesions on my lungs, I dont think I had an angogram, but my ECG always come out perfect......
I did have ultrasound on my liver and viens in my legs, which all came back normal......
all I can say is try not to worry, I know its easy for me to say, but vasculitis can be underlying for many years without any damage to organs, its when its starts to show its self in the type of symptoms I have already described the you know something is happening and something needs to be done about it........but its treatable........
when the pain in your joints are so bad you can barely walk then that is realaly a good time to get sorted......
rocky31676 MattC13
Posted
How are you doing? Did you do any angiogram tests ?
Yes, Biopsy is the only test to find out vasculitis other than CrP and ESR , cANCA/pANCA and RF, anti-CCP, cDNA.
Did they find out what kind of vasculitis you had?