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