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View Full Version : Well, here's the deal with me then...



AnnaG
02-10-2010, 04:25 AM
I found your group in doing a search on several things my dr said may be at the root of my problem. From the sound of it I may be joining you. Feel free to comment, add suggestions, advice or opinions as you will. I'll appreciate any and all of it.
So, I'm a 47 year old white female. ( Sounds like the start of a personal ad huh? :P) I will tell you what is already known for sure at this point.
I have fibro, arthritis, chronic B12 deficiency, past anemias, high cholesterol, degenerative disk disease and irritable bowel disease of unknown origin. At my physical for the last year I've had hematuria for some time with no symptoms. Uro did cytoscopy which was fine, so ordered an abdominal CT. GP called and said I need to see a pulmo because the ab CT caught the bottom of my lungs and I have nodules. So I went to pulmo and he says they are small, 3mm or so, and am having a full lung CT tomorrow morning. He says there are several things these nodules can be, but from what I've been reading only one thing also involves blood in urine and the other synptoms I have. Wegs. At first I was pretty sure the nodules were probably from an old histoplasmosis infection I didn't know I'd had or something, because that is pretty common here in Iowa where I live. But that doesn't explain the other array of stuff that's going on with me. It's really going to make those other doctors look like fools to find out they been pooh poohing my 'fibro' and telling me to see a shrink if the pulmo has hit the nail on the head eh?
I take 1cc of cyanocobalmin IM every 2 wks and that has the B12 deficiency under control as of my labs 2 weeks ago. I'm on Zocor for the chol, which was 274 at last labs. And an array of other crap for the fibro and bowel probs. I've had multiple polyps removed in the last few years. Also just had to have a cortisone shot in my right elbow for a case of tendonitis that mysteriously appeared and wouldn't heal.
I did have one ANC come back positive 2 years ago but they said they didn't know why that was or it could be nothing. ok.....
I've constantly had sinus infections and ear infections for the past couple of years. My old GP, whom I've since fired, told me I had scarring in my nose from picking it. I don't pick, sorry dude. XP ( As an aside, I did tell him he is an asshole at one point and he stopped and listened to me, lol) So I went to an ENT who said on scope that I have thick sinus ridges and gave me the nasal wash lesson, which I do when things get unbearable. I have a chronic sore throat. BUT, I am a smoker, so I'm sure they have attributed much of my issues to that. But if I didn't smoke, by now I'd have ripped somebodies head off and... you know the rest.
Anyway, I'm also a single mom of 8yr old twin boys. Thier dad bailed when they were a year old. We live very happily in a small town in Iowa with a 17 pound cat and a 85 pound lab. And when my arthritis flares and I run to the DR every 3 month for a steroid boost I feel great for a few days. AHHHH. I know pred is/can be bad, but boy I live for those. I also use Advair a lot lately cuz I feel like I can't breath. Again attributed to the dreaded cigs. But I started breathing a lot better after a couple months of the B12, it was amazing really. I must have been pretty anemic.
And last but not least, my mother had MS. Don't know much on genetic history as she was adopted and my paternal side is unknown as well. My grandma raised me so I don't know much about sibling history either.
So there ya go. What do you think? Honestly. At this point if they don't figure something out I am ready to pack us up and go to University Iowa hospital, dog and all. ugh.

jola57
02-10-2010, 04:50 AM
Oh Oh it does sound like Weg. Holly molly, you had a positive ANCA with all the symptoms and they just atributed it all to fibro? Or was it ANA which is a marker for arthritis. The fact that after pred boost you feel better should have rang their bell. But like with all of us diagnosis of Wegs is always almost like adiscovery of sorts. There is so little know about it that docs usualy don't know about it. The only sure way to diagnose it is to have a biopsy. Since you sinuses and lungs seem to be affected those would be the sites where the biopsy should be taken from.
Talk to your docs about wegs and what you have learned. Let us know how it went.

AnnaG
02-10-2010, 05:04 AM
ANCA, yes it was. I think they were looking for Crohns Disease. I have ulcers throughout my digestive tract off and on. Don't recall the numbers tho. My memory sux at times. Thank you for your reply. And yes, I think you're correct in that they will likely biopsy me soon. From what I've read tho, they have to get the right spot and it can be tricky. The nodules they've found thus far are small, so I don't know if they would go there or not. Under flouroscopy to be more precise I imagine. Or do my kidneys. I bet that would be easier. They took 3 vials of blood last week also. I think they are checking protienase and other kidney function. I know sometimes my pee reeks like a dead mouse. I hydrate constantly tho, because I'm alsways thirty. So At least I'm flushed lol.

elephant
02-10-2010, 05:56 AM
Anna welcome! It sounds like WG disease. You need to get to a Wegeners specialist and look at the Vasculitis Foundation web site. I am from SC and go to Cleveland Clinic in Ohio to see Dr Langford the Wegeners Rheumatologist.
Sounds like your plate is full. I know this is so frustrating! You really have to be pushy to get the right treatment and it is hard to find a good doctor. So for what it's worth, Wegeners can kill you if not treated so if you see a specialist they can either rule it out and mabey direct to other autoimmune diseases. I'm a nice nagger.

AnnaG
02-10-2010, 06:13 AM
LOL, thank you elephant. Indeed I have looked at VF, I actually read there before I found this site. I'm not too far from Mayo plus the Univerity Hospital is about 5 hours from here at Iowa City. I figure I'll do these next round of appointments, the lung CT, the uro follow up, TB test and such which will put me to the 22nd of this month and see what all they have come up with. If no idea then I will ask for a referral from them to Iowa City or Rochester. My friend Kathy can take my boys for me so that should work. I'm pretty tired these days. I slept 9 hours between coughin fits last night, but I'm still tired. And I hurt. Of course if something flares badly before then I will hit the ER or something. But at this point I figure even a specialist in Wegs would order these same tests so will get them out of the way. I use the McFarland Clinic and they are actually very good and have centers all over the state. The best thing about my Gp I have now for the past couple years is that he plays it safe and always has things checked out. I did have one ortho that totally sucked tho. I no longer see him. They have me going to a better one now and I think after my report on the other one, well, he doesn't get referrals from my clinic anymore. ;) From the time they found my nodules til I saw the pulmo was like 3 days, so that's pretty good IMO. The 18th is when I see the pulmo next after tomorrows CT. And I see the uro on the 13th, this saturday. I have a desk planner or I'd be so cunfused with all these appointments and tests.
My concern atm is that I have the lung CT at 8:30 in the morning and my street still has a couple feet of snow on it. I'm hoping they get it plowed soon. Morons. X(

elephant
02-10-2010, 08:47 AM
Ann sounds like you are on top of it. That is great. Good your having a lung CT, then you will find out about your shortness of breath hopefully. Good luck to you!

AnnaG
02-10-2010, 09:01 AM
Thank you hun, as you know it gets frustrating at times and I think the worst part is sitting at the clinic waiting. But hey, what else is there to do, right? I actually have a lot to be thankful for when I think on it. I was just reading on one thread about some poor man who died from lack of diagnosis and treatment. What a waste. I'm very lucky that I have smart drs. So very lucky.

Sangye
02-10-2010, 10:00 AM
Hi Anna,
Welcome to the group.

I say "Ditto" to everything Elephant has already said.

I'll also add: Lung involvement alone tends to progress slower, but kidney involvement can progress extremely fast. Some people have gone into kidney failure within a matter of 1 or 2 weeks, sometimes without symptoms. Since you already have some sort of kidney involvement, I suggest insisting on the speediest tests/results/appts possible. This should be considered urgent.

AnnaG
02-10-2010, 10:12 AM
Thank you Sangye. My next uro appt is on saturday, 4 days from now. I'm hoping he gives me some news on what's going on with me then. I really appreciate the wealth of info you all have shared with me. It helps to understand what's going on even if I can't do anything at the moment.

moyan
02-10-2010, 10:53 AM
Hi, welcome Anna. I only found this site in late Dec and now know what it is I am having. Docs seem to know so little about this disease. I too was misdiagnosed and lost a toe due to that, but we have too many anyways. I read and read here, old posts and new and can now to some point tell the docs what I want.
Sangye and elephant, can docs give preds on the suspicion of WG? Moyan( Laughter is internal jogging)

elephant
02-10-2010, 11:30 AM
They will give Prednisone if your joints are swollen, your showing signs of shortness of breath with or without blood, sinus problems( crusting, swollen sinuses) that won't go away after being treated with antibiotics, elevated sed rate and CRP ( another indicator for WG flare).

AnnaG
02-10-2010, 12:35 PM
Ok, well I made an album with a few pix if you want to look. I was feeling pretty crappy the day that pic of Barney and I was taken. My avatar is what I look like when I'm feeling better. :)