Dying for a diagnosis: no pun intended

[crowneagle]

I'm a new member to this site and it's been a frustrating journey. One of the most frustrating things about autoimmune diseases in general is the long period of time to get properly diagnosed. I started out by getting uveitis about 1.5 years ago. That was after having a history of junk in my lungs and being hospitalized with pancreatitis. My anca was abnormal then normal with no rhyme or reason for the conflicting results. No fewer than seven doctors have taken their shot with me. I even went to the doctor that invented the anca test; Dr Niles at Mass General. One thing he told me is that anca is not a fool proof way to diagnose Wegners.

Now, a couple of weeks ago, I went to the emergency room with one of the worst pains I've ever had. A CT scan determined that I might have a blockage in one of my kidneys. From everything I've read, this development is the big cahuna when it comes to Wegners. I just had a MRA and more blood work. If you didn't know me and looked my arms, you'd swear that I was some kind of drug user. Right now, I'm just waiting on the results thinking of what I need to put on my bucket list; just in case. Last night, it seemed like I was having pain in both of my kidneys. It seemed to subside with a couple of aspirin. These diseases leave you babbling to yourself sometimes wondering what is real and what is imagined. Anyways, diagnosis permitting, I will be asking many questions on this forum in the coming months.

[Psyborg]

Welcome to the forum. And you are spot on with the what is real and imagined thing. Even with the diagnosis I find myself in that boat on occasion. I don't have any kidney involvment, so I'll leave any answer there to someone with experience.

[Col 23]

Welcome, have not been on the forum for sometime. Understand and empathize with your frustration. The real and imagined got me too. I often think this is not real and wonder if I have a big dose of hypochondria However because we have to be so onto this illness you get to know what is real after awhile. Col 23

[HopeinTN]

Welcome. You have came to the best spot for info. I have lung involvement and not kidney so not much help with that organ. I do know that a blockage in yoru kidney can be other things such as a stone. Trust me, this is a very painful thing. Maybe that's what's going on and not something worse.

My diagnosis was far quicker than most and the ANCA didn't get me there. The biopsy/lobectomy did.

I too catch myself going between real and imagined. It's a tough spot to be in and I have drove myself crazy thinking about it. I have far more issues that have come up from the treatment rather than the disease.

I hope you are in good hands and get some answers soon.

[crowneagle]

Actually, when they did the CT scan, they ruled out a kidney stone. About an hour ago, my opthalmic immunologist called me to tell me I need to get in see this Dr Niles ASAP. I told him I need to at least wait until I get the results from the MRA and bloodwork. I feel like I'm in court waiting for the verdict. I hope I get probation instead of death row. One thing about living in Massachusetts is that we have so many specialists at our disposal. Anyways, gotta call my GP and see if my results are back yet. Wish me luck.

[renidrag]

If you are going to MGH I would strongly suggest you see Dr. John Stone in Rheumatology, he is number one in vasculitis and auto-immune. Others here will also tell you that a Wegs specialist is so important for the very reason you are experiencing now. A wegs specialist can connect all the dots. Good Luck and welcome to our club.
Dale

[crowneagle]

I just got off the phone with my GP's office and they read the MRA report to me. It appears there's no renal artery stenosis. I'm not surprised about that since it's only been my capillaries that were affected in my eyes. They did note what they thought looked like arteriolsclerosis in some blood vessels in the kidney. I have no idea if that is what they are seeing or if it is small vessel vasculitis. I mean that a radiologist could spend a lifetime doing their thing and not actaully see one case of this in their career. I made an appointmeent with Dr Niles at MGH and will bring the imaging with me. He'll know what to look for. I have no history of high blood pressure but the low grade pain in my back continues unabated. I appreciate the recommendation of yet another doctor. But, I'm happy with my team thus far. It is very difficult for me to get to Boston and it is a financial burden every time I go there. This Dr Niles specializes in how these diseases affects the kidneys. Anyways, my GP isn't probably going to be happy that I bypassed him but when it comes to the kidneys, why take any chances? Just got to pick up all the imaging and take the trek to Boston next Wednesday. The one lesson I learned this week is that every doctor is more than happy to check you out and even keep seeing you but as soon as something comes up that could be very dangerous, they quickly defer to the doctor that can really make a difference.

[annekat]

Welcome, Crowneagle,

You will find this site to be a great source of info, friendship, and validation of what you are feeling and experiencing in regards to this disease. I would not worry about bypassing your GP when something serious is going on with your kidneys, or about anything that is WG related. And I would stick with the team you are confident in. There could be specialists with more experience, but he could be reaching that level himself, for all we know, and I'm sure he knows who to consult with or refer to if necessary. Only my gut opinion.

BTW, I may know your Dr. Niles from childhood. I remember doing some research on him once. That is neither here nor there, and he may well not remember me, but we could communicate about it by PM sometime if we get around to it.

[mishb]

Hi Crowneagle.

I'm glad you found us and I hope that it is not WG, but fully understand the need to, at least, get some sort of answer.
No-one likes to feel unwell.
I can relate to the waiting part and not having a diagnosis. Mine started with joint pains (which was confirmed as RA) then sinus infections and then Uveitis.
This is all since early 2009 but I wasn't diagnosed with WG until Aug 2010.
I actually have any appointment today with an Opthamologist, some 4 years after the eyes started. Main reason is because the eyes cleared up once I started on prednisolone.
This appointment is basically to see if pred has caused any unseen damage to the eyes......if one doesn't get you, another will.

Good luck and I hope everything turns out okay

[Col 23]

Process of elimination and reviewing of accumulation of symptoms takes time. Wishing you all the best for a speedy Diagnoses. This illness moves very fast so sooner the better to stop any damage. All that stress will go and you will feel so much better when you get some answers.
You must be so over tests and more tests.
Hang in there.
Col 23

[drz]

Your post brings back some bad memories of my first hospital admission brought on by Wegs. I was diagnosed with several problems I didn't have but after ten days they finally figured out I was dying from something other than what they were treating but they had no clue what was wrong till they sent a bunch of my blood to Mayo for a consult. When those results came back and suggested I had Wegs they then transferred me the same day to another facility in larger city that had some experience in treating Wegs.

I remember well the anxiety thinking i only had a few days left to live after a week in the hospital. The doctors told me my kidneys were failing, my hearing disappeared in only ear with normal hearing, and I started coughing up blood. And my doctors had no clue as to what was causing any of it. My only thought at that time was should I go home to die or stay in the hospital and hope they figured out what was wrong.

After I got transferred to a bigger facility and finally got correctly diagnosed by kidney biopsy, then the issue became could I or would survive the treatment and could the treatment get the Wegs under control before it killed me or caused any more major damage. But like another fellow Weggie told me, if you can survive the treatment, things do get better.

So here is wishing you success in your treatment and hope you also get into a drug induced remission without too much complication or damage. It can take awhile but there is life after a Weg (now GPA) diagnosis although for me it is very different but now life also seems a lot more precious. Best wishes for successful treatment and welcome to our group.

[crowneagle]

Thank you so much for all of your support. I did finally speak to my GP yesterday afternoon. He said that my test results showed the situation had not gotten any worse. He also agreed that I see Dr Niles. I have heard of Dr Stone; probably through my original vasculitis research. But, I have to stay with doctors that are currently on my health plan. I do love my GP and I'm hoping we grow old together. Besides being a GP, he is a teacher at Umass Medical School.

My original uveitis has been stable with only a small loss of sight in my left eye. I see a Dr Assini out of MERSI in Boston for my eyes. He sees me every three months. I did recently have an episode of laryngitis which may or may not be related to my disease. Never had laryngitis like that before. One thing I have going for me is that I have no hypertension(bp averaging 115/75) and blood studies say I have no predisposition to chunky blood. I am the 4th person to get some sort of autoimmune disease in my direct family. My sister and daughter have Graves disease and my father has Sarcoidosis.

Anyways, going forward, I suppose that it would be appropriate that I post in the right categories from here on in. It's been really great that I found this website. It is hard to talk to people about my condition since it is so novel.

[annekat]

I had some pretty persistent bouts with laryngitis during the 2 year period before I knew I had WG. These have gotten much more rare with treatment. Your blood pressure sounds great; wish mine was consistently that good, though it's never terrible.... don't really know what that means in regard to WG, anyway, except for the danger of blood clots, of course. It sounds to me like you have a great team of doctors and I hope you get a definitive dx soon. You can keep posting on this thread for as long as you want! There's a thread on here about one person which is almost 200 pages long. But starting new threads is great, too!

[crowneagle]

I have my appointment in Boston tomorrow. Today, I'm writing my recent history which includes a real bad case of laryngitis, big time bowel problems, and kidney pain. My bowels seem to be coming back to normal after being bound up for almost two weeks. I understand that this can be a rare offshoot of Wegners. It happened at the same time as my kidney attack. I think the emergency room screwed up in suggesting the proper diet but anyways, it seems as if I have it under some control. I'm sure the oxycodeine they put me on didn't help much. But I took it for only a couple of days. I went on a low fiber diet and after taking every home remedy imaginable, I'm adjusting to the situation. If anyone has had similar issues, I'd like to hear about it.

On a brighter note, I went ice fishing Sunday and God blessed me with a beautiful rainbow trout caught through the ice. It was at my lake house that I was hoping to use full time in about six more years. For now, I rent it out. There's nothing like setting up your tilts on 3 inches of black ice.There's sleeping and then there is sleeping after a day of ice fishing. Your brain seems to go into another state of being. I woke up just in time to catch most of the second half of the Super Bowl.

[annekat]

Can't help you with the medical issues and I hope someone can. But I really enjoyed your description of ice fishing and your lake cabin. That is something I will never experience since I live on a body of salt water in a place where it never gets that cold. But I can relate to the part about sleeping.

[HopeinTN]

I think you are right in that the pain meds caused the constipation issues. Anytime I'm in pain and have to take meds or when I'm in the hospital and given pain meds via IV, I always take a stool softner. It has made a world of difference.

Have you cooked the trout yet? That makes me hungry thinking about it.

Good luck and update us after your appointment.

[crowneagle]

1854

The Rainbow trout in all his glorious colors. I'll probably save him for Easter. We're suppose to get a snow storm Friday. Maybe have a sledding party Sunday. Our sledding hill is below.

1855

[HopeinTN]

It's beautiful, and I'm jealous of the snow. I miss the snow.

[drz]

Can't help you with the medical issues and I hope someone can. But I really enjoyed your description of ice fishing and your lake cabin. That is something I will never experience since I live on a body of salt water in a place where it never gets that cold. But I can relate to the part about sleeping.

One of our local lakes has a bar out on the ice and it is called the Ice House Hole. It has fishing holes inside and seats up to 20 people. this bar has got some national press and was even mentioned in the Wall Street Journal. My daughter suggested I go out there but it is only open on weekends and they have a big fishing tournament this weekend so it would be a poor time to go out there. They say the road out to the bar is well marked and maintained and a short drive from shore. The food menu is rather limited to what you often get in a bar as they serve pizza, hamburgers and sandwiches. There are lot links to this story but here is one: If it is on your bucket list I will buy you a drink there.

Ice Hole serving thirsty anglers | The Fergus Falls Daily Journal (http://www.fergusfallsjournal.com/2012/01/27/ice-hole-meeting-demand-of-thirsty-anglers/)

Bar on the rocks | The Fergus Falls Daily Journal (http://www.fergusfallsjournal.com/2013/02/05/bar-on-the-rocks/)

[crowneagle]

It's funny that you mentioned that because I just saw that video online. That is so cool! Unfortunately, I don't think they would allow that here in Mass because many of the lakes are spring fed and the ice can be kind of fickle in regards to thickness. As a matter of fact, there seems to be less and less ice every year. Thank God we had a good cold snap a couple of weeks ago. My primary lake has already broken up in some spots. I'm going again tomorrow for probably the last time this season. An ice fisherman's best friend is a sharp awl hung around your neck in case you fall through the ice. You can use it to pull yourself out before hypothermia kills you.

I'm off to Boston this morning. Just got done writing just about everything that has happened to me over the past year. I need a diagnosis really bad. At least I'll know if you all will be stuck with me for the long term. One doctor told me there are 95 different autoimmune diseases and/or conditions. Some of my symptoms are classic Wegners but some of the symptoms that you expect that I would get, I don't have. I've tested positive for c-anca but I never tested positive for the pr3 antibody. I never did get that classic nose or sinus issue. The main symptoms I have got have been uveitis, kidney issues, and lung issues. I've had pancreasitis, laryngitis, bowel and testicular isues. After all this, I actually lead a pretty normal life; other than when something comes out of nowhere to bite me in the butt. One thing I have learned is to pay attention to everything that is going on in my body just in case it is related to my condition.

[renidrag]

I hope things go well for you today.
Dale

[annekat]

I know there are people on here who not not have sinus issues, though they may be hit pretty hard with lung or kidney issues, eye problems, and severe joint pain, among many others. I think one of the really smart people on here said there are something in the neighborhood of 100 different symptoms having been determined as associated with Wegener's/GPA.

[crowneagle]

Well, I'm back from Boston and I'm really not any closer to a diagnosis. The MRA turned out to be substandard from a diagnostic view point. He wants to rule everything else out before considering immunosuppressive therapy. I'm being scheduled for an echocardiogram to rule out any heart issues and if that turns out all right, he plans to do an angiogram of my kidneys. He did an EKG in the office and that turned out fine. He also took blood for another round of anca testing. Because I've never tested positive for the PR3 antibody, I think he is taking the slow approach. My creatinine levels tested as being good; so there's no rush right now do something just for the sake of doing anything. At least I'm happy with the short term plan. I'm in no rush to take chemotherapy drugs. I've still got a full head of hair and it would be nice to keep it. I can't imagine what many of you have been through. I just want to wish everyone here good health and a long life.

[annekat]

The hair thinning does happen, but with our low doses of chemo, compared to those of a cancer patient, the hair loss is much less.... could vary with the person, I guess, but having a full head of it to begin with should help a lot!

[Sangye]

I'm just reading your thread now, crowneagle. I hope you can find some answers soon. In order to diagnose Wegs they need a positive biopsy from some affected tissue or organ. Most Wegs docs are appropriately reluctant to treat without a positive biopsy or at least without a lot of empirical evidence of Wegs. (Biopsies are not always conclusive)

To correct a common misconception: there really is no such thing as classic Wegs. If you take 10 of us on here we look like we have different diseases. Many people don't have sinus involvement. Wegs might just affect one area (though there is nothing keeping it from becoming active in other areas at any time). I mostly just have lung involvement. I've had skin lesions in the past but not for some time. And unless what is currently going on in my nose is Wegs, I haven't had any nose or sinus involvement, either. Unfortunately, my lung involvement is the worst kind-- alveolar hemorrhaging-- but fortunately we are keeping it under control.

I also think a trip to a Wegs doc in Boston is a good idea. If you do have Wegs, it must be diagnosed and treated without delay and by the most qualified doctors. We just lost a beloved forum member-- someone who never had a Wegs specialist and always needed one. Be well.

[renidrag]

Nice to see you back and properly nagging
Dale

[Sangye]

LOL Duty calls.

[crowneagle]

I just got some of my blood tests back and if I could expound a little on those, it would be great to know what they mean. I tested positive for an ANA screen with a homogeneous pattern. Total Complement (ch50) was also elevated. Since I am, as of yet, undiagnosed, I am asking as a guest to your wonderful site. I have a echocardiogram scheduled this month just to rule out any heart involvement. If that comes back good, they plan to do a angiogram on my kidneys. Since I just got these results today in the mail(Saturday), I will be calling my GP Monday to see what he thinks.

[mishb]

A positve ANA test means you do have some type of Autoimmune disease.
I have a positive ANA and a positive ANCA.
Did they do an ANCA test? This is the one that is for Wegeners or for MPA or possibly Churg-strauss
The ANA will tell for Lupus, RA, Sjogrens, scleroderma and Mixed Connective Tissue........some symptoms can be the same as what you are feeling.
For me it is WG, MCT combined with RA

I hope your GP can give you some definitive answers on Monday

[crowneagle]

After examining this lab report more closely, I'm tending to not worry it about as much. It appears that the ana ifa screen was just barely triggered with ana titre at 1:40. From previous experience, I'm not too worried about that. The elevated ch50 triggered testing on c3 and c4 which were within limits. I almost wish I had never been diagnosed with the original vasculitis because my lab results have been all over the planet ever since. Sometimes positive for anca, sometimes not. I do agree with Sangye in that a positive biopsy will be the only way I'll ever have anything definitive. I've learned that the blood tests can be highly erratic.

I did have a normal eye checkup for my eyes with an optometrist and told him about the uveitis I had the previous year. He gave me a weird feeling that these things can be so vague as to origin, that I may never find out what triggered the original symptoms.


Anyways, thank you for your patience and I'll be back if I learn more.