Suspected Wegeners...please help

[Amanda888]

First I want to say I've been lurking on this forum all day and you guys are a great group of people! So compassionate and inspirational. I have not been diagnosed yet but Im almost positive I have Wegeners from the research I've done over the past few days. I thought maybe if I share my story someone could point me in the right direction.

It started about 2 months ago with what I thought was a cold, took zicam and never really even ended up coming down with it. Then the random shooting pains at the top back of my head. I chalked it up to anxiety or ice pick headache. Next came left sided sinus pain and oh man the pain. I never really had congestion or any funny colored mucus so I wasn't quite sure what to make of it. In the middle of all this I came down with a 48 hour flu. It did go away but I think thats when the general fatigue and feeling yucky set in. After one night of painful left sided temple and jaw pain I went to the doc. He prescribed antibiotics for a sinus infection. I did initially make improvement with them but on maybe the 4th or 5th day my symptoms came right back. The fatigue, no appetite, throwing up, red irritated eyes, left sided sinus pain. After that I was given new antibiotics and medrol dose pak. Within a day or two I was feeling great, appetite came back, pain went away, energy was lifted.

Now today...my last medrol pill was this morning and by this afternoon the symptoms were back. Scared, I left work early and drove to the doctors office. He recommended a CT sinus scan and maybe bloodwork. A little backstory, Im completely self pay, I have no insurance. Im so scared and have no idea what to do. I know early diagnosis is key but Im not sure exactly what tests need to be done? My husband thinks Im a hyperchondriac and wants me to get bloodwork but feels if its negative this is probably all self induced. I just started a new job this week and they offer health insurance but I think I have to wait a bit for it to kick in. Plus with the way I feel I have no idea how Im going to be able to work. I don't know where to turn. I feel so helpless since its Friday night and not much can be done over the weekend. Any help you can give is appreciated. Thanks so much!

Edit: Wanted to add that over the past 2 weeks or so I've had 2 nosebleeds but I've had nosebleeds since i was a kid so not sure if its related? Both times have been when I was in a hot bath and its not totally abnormal for me to have that happen after a cold or during the winter time when the air is dry. Also, If Im having head pains does that mean brain involvement?

[MikeG-2012]

Sinus pain could be the reason for the pain in your head. Stress too, but you don't have any of that, right? (-8

with the bloody nose, go get a NeilMed sinus rinse kit and start irrigating the crap out of your sinus that has the pain. Getting th gunk flushed out of there should give you some relief.

If the prednisone dose pack did help, ask for a longer dose and see how you feel while on that and until they can get you tested more thoroughly or your insurance kicks in. If you can at least get some pred, which I believe helped you before, it might make it lessen the symptoms so you can at least struggle through a work day, right?

Find an ENT. That will scope your sinus to see if there is damage in there. If they are not looking inside, the find another one.

all I can think of now, anyone else care to share any thoughts?

[LisaT]

Try to not tell your employer much because it's really important that you get the health insurance. If you're still on probation they could let you go without cause.

This sounds really stressful and I'm hoping Mike's good suggestion of prednisone can help you to get through the period of time it will take to get insurance. Do you know how long it will be before it kicks in?

Your husband's attitude is unhelpful and if you do have the disease you will need more understanding and support. Perhaps you could share with him that your symptoms are similar to those of many others here. I HOPE that you don't have it. If you do, (or even if you don't but want to stay here due to similar symptoms and a great bunch of people), we are here for you and with treatment you should be able to manage it. I know it is scary and overwhelming right now... Once you know what's going on and have a treatment plan you can start adjusting. In the meantime, do whatever calms you and gives you peace and that you have energy for, even if it's just meditating or listening to calming music... Reading a book, watching a dumb tv show. I find distraction good in the waiting stages.

[Amanda888]

Thank you so much for the replies! As of right now my main symptoms are no appetite (i've lost 6 pounds in 2 months) very tired, red mildly irritated eyes, slight pains on the sides of my head, and overall achy/ crappy-ness. I feel really weak too but Im sure thats due to not eating. I also feel like i cannot get enough to drink, my mouth goes dry pretty quick. No real sinus issues at the moment, its so frustrating. The weird thing about all this is when I was having sinus problems I just had pain in the sinus areas, no real congestion. Is that normal? Also, any suggestions on making yourself eat? I know I need to but I just feel like barfing at the thought. I think the doc is pushing for the CT of the sinus but I can see if he can give me some more medrol. That might not be a bad idea. I think the insurance might kick in around 3 weeks?

[LisaT]

I usually have an appetite, but when I don't I have smoothies or juices (you can add a protein mix, or peanut or other jut butter for protein), just check ingredients so you don't have any herbs that could interact with meds), and things that are easy to get down like toast or crackers (gluten free in my case), fruit. I find bananas have a way of settling my stomach and sometimes paving the way for a meal to follow. If the thought of a big meal makes you queasy, just graze or nibble. If you can get in a bit of fruit and/or veg and anything with protein (nut butter, seeds, quinoa?) it will give you some strength. Sometimes just plain rice is good in those times too. That's all I can think of for now... I hope you find something that appeals and that you can get down.

[Amanda888]

I love smoothies and quinoa sounds really good! Great suggestions :) Its funny when you are sick how little things like what you like to eat escape your mind. Im force feeding myself some organic yogurt right now I'll try for a banana smoothie later. I'm feeling a little better today than I did last night, probably because I got some sleep. I just keep worrying since I feel so alone in all this. I haven't really suggested the possibility of a vasculitis disease to my doctor yet and I'm not sure what he'll say. I guess I'll call him Monday and see if I can get in.

[annekat]

Welcome to the forum, Amanda. It certainly helped me in the beginning stages to determine that I really had WG. I hope you don't, but if you do, take heart, most of us have done well with proper treatment. Some of went months or years without a diagnosis but are here to tell about it and doing well. That said, it is very important to catch it early. I agree with the above about staying on prednisone until you can get a dx and treatment. And yes on the sinus rinses! Also, if you can afford any care out of pocket, you could go for that.... seeing an ENT is a good idea, to assess the condition of your nose and sinuses; if they look suspect he might go ahead and do a biopsy there. Bloodwork would also be good, as would a CT scan. But these things get expensive, and you could get away with waiting 3 weeks for the insurance to kick in. I hope your doc will be supportive in the meantime, and yes, go ahead and mention the vasculitis possiblity. The prednisone makes most of us want to eat... maybe you need more of that! We don't like to overuse it, but it takes care of a lot of issues while waiting for a dx. Good luck, and let us know what happens.

[Amanda888]

Its so nice to feel like there are people here who understand what Im going through. Not to mention the wealth of knowledge you guys have. More than most doctors! Thank you Anne, Lisa and Mike for your kind words and making me feel welcome. As I go through the tedious process of getting diagnosed Im sure I will have many more questions.

[godgirl]

Hi, Amanda, and welcome.

There are a few things I want to address in this reply. First is the self pay status you have. I work as a quality assurance specialist in medical billing for a provider. Talk to your employer and make sure when exactly this kicks in. These aren't stupid questions - you need to know, and your employer will understand. You don't have to tell them you are sick - just tell them you want to "have all your information correct" or something like that. They're normal questions from new employees. If you think it's effective in 3 weeks, my guess is that it will kick in on August 1, which is only 11 days away. At that point, you should be able to wait for all the testing. But you want to make sure - very sure. If it doesn't start until later, I'd speak with the Patient Advocate with your medical group. (It might be named something else.) This person would be able to help you navigate the Medicaid system and get you temporary coverage until the insurance kicks in. It can also be retroactive - meaning they would pay for prior services. But you'll need help navigating all that. The tests that you may go through can be very expensive and add up quickly. If you don't qualify for Medicaid, don't put off testing. You can also talk to the medical group about a Charity Care program or something to help you out in the short term. Just make sure to talk to all these people. It may be a pain in the butt, but it will save you from a possible pain in the wallet later on.

Next - welcome to the undiagnosed club! I'm only half joking, because it kind of sucks. I've been undiagnosed since mid November 2013. The closest they come is "Unspecified connective tissue disease", however, my rheumatologist thinks I either have Wegs or Cogan's Syndrome. Mine started with a red and painful eye that ended up being scleritis. Luckily, the opthamologist I saw suspected something more and sent me to my primary to have labs done. He also put me on a high dose prednisone taper in the meantime. After initial bloodwork said there were antibodies in my blood, my primary sent me to a rheumatologist, who did a slew of tests - ct scans, bloodwork, mri, etc. I saw the rheumatologist a month after first seeing the eye doc. By then, my pred taper had finished, and my eye flared again. I went through another taper while being tested for all this. During this time, my hearing was affected and I started having nosebleeds - and I NEVER have nosebleeds. Pain in the sinuses and my migraines changed, too. I went through two more prednisone tapers and they finally just left me on 20mg indefinitely. The rheumatologist then started me on methotrexate, and I've been able to taper down to 10mg prednisone. They don't have any "proof" of Wegs, but they're treating me as if I have it.

Don't get too scared of what's on the internet. Anne's right - there are a lot of people on here that have had Wegs for a long time and they're all right. There's a lot of scary stuff out there. As to wegs in the brain because of headaches? I wouldn't worry too much about it. The change in my migraines seems to be connected with my eyes and stress (especially stress while I was going through all the testing). I had an MRI, and there wasn't any sign of wegs. I also had a CT angiogram of my brain's vascular system and it came back ok. So, my advice for that is to try to relax. This is going to be ok, no matter what it is. You have to be your own advocate and make yourself heard, though.

I also wanted to let you know that I also work full time and go to school part time. I'm in my early 40s, so I'm not some youngling and this stuff takes a lot of my energy. I don't feel the best all the time, but I'm able to do it. So, don't get too worried about "will I be able to work?" You feel crappy now, but it will get better. Especially if you can get back on the prednisone. I'll be praying for you. I know how scary and stressful this is. I KNOW. :)

Jen

[Amanda888]

Thanks Jen! Hugs to you! Im 33 married and was planning on starting a family but who knows now....So are they only treating you with steriods at the moment? You aren't on any other meds? Completely off topic but Ive been running a fever of 99.1 for a day now, is that anything serious? My eyes feel feverish too.

[godgirl]

I'm being treated with methotrexate, too. So I'm on 20mg methotrexate and 10mg predisone for the time being. And then taking 6 billion other pills for side effects. :glare:

99.1 isn't that high a fever, but watch it. And if your eyes feel funny, you'll want to see an opthamologist at some point. That was weird for me. I'd never seen one except to get an eye check for glasses. Now I can't stay away! Did the prednisone help your eyes? And is there any pain?

[Amanda888]

Aw, I missed the methotrexate. My eyes just feel a little feverish if that makes sense. It comes and goes really. I do feel a tightening or pressure on the sides of my head, my throat feels funny and I feel like I have the flu. Yay. Lol. The medrol did help all my symptoms while I was on it. I'm so worried about so many things right now. I will try to get to an eye doctor soon.

[annekat]

Yes, a fever, even not a high one, but higher than your normal, can be a sign of WG, as can any weird feelings in or around your eyes. I had both of those, and some pretty bad headaches right before dx. The docs didn't pay much attention to the headaches or the eye issues, as they were focusing on my lungs, which were starting to get in pretty bad shape, and my sinuses. The headaches and eye issues cleared right up with treatment, and turned out not to be anything serious. But every case is a little different, of course.

[mishb]

Hi Amanda and welcome.

Gosh I hope you don't have Wegener's, and we will help you in any way we can.

I am in a few different groups on facebook, due to my other conditions.
The groups I am in are for Wegeners, Lupus, Rheumatoid Arthritis, Microscopic Polyangiitis (I don't have this) and Mixed Connective Tissue Disease (Hey, when one Autoimmune disease just isn't enough :razz:)

The reason I am mentioning this is because when I see posts from newly diagnosed people, in these other groups, I could swear that they all have Wegeners.
So many symptoms are exactly the same as each of these other conditions and more. Sometimes I wonder how the doctors can manage to distinguish one from the other - however, we all know that it is from the blood test results and/or biopsies.
In the case of Wegener's the ANCA result is not a factor in the other conditions that I have mentioned above.

It really sucks that you have to pay for all of these tests, but ANCA is one that you really do need to have.

.........I will say again - I sure hope that you do not have Wegener's :hug2:

[Amanda888]

Hey Michelle :)

I sure hope I don't have it either but I know something is just not right with me lately. If the symptoms are so similar I do wonder if I might have a different auto immune disease. I think the place Im going to start is with this lab: Lab Tests Offered | Discount Blood Tests at the Lowest Prices Online (http://www.healthonelabs.com/pub/tests/test/pid/171) Then if the sed rate is wonky I will go ahead shell out $300 for the ANCA test next. I seem to have constant temple pain thats different than a headache. It kinda pulsates and is always really tender in that area. I wonder if its sinus or artery? Maybe I need a regular head CT as well as a sinus CT...

[annekat]

If you can afford that first test, I'd go ahead and do it for your own peace of mind. As for the ANCA, that is important, too, but keep in mind that a low or negative reading doesn't rule out WG. I had a very low reading and my doc, who didn't know much, tried to rule it out on that basis. Little did he know, while he was on vacation, I'd gone ahead and gotten a nasal biopsy from my ENT, which was positive for WG... plus I took off my glasses and showed him my new saddle nose. (Don't worry, many don't get these, especially if their sinus involvement is light or moderate and is caught fairly early.)

I would agree with what was said above, find out exactly when your insurance kicks in. Maybe you can save yourself some money if you can wait a week or two.

[Amanda888]

I seriously heart you guys so much! Thanks for being so awesome with all the helpful replies! Today is the first day since Friday I don't feel like I have the flu, no sinus pain still have mild temple tenderness/pain. My eyes look a little red but don't feel too bad. I swear this has been happening for 2 months now, fine for a week, sick for 5 days then fine for a bit, sick for a bit. Such a roller coaster. If the blood work comes back normal what would the next step be? I really don't think a nasal biopsy would show much. The "sinus infection" I had was only around for a month and a half and that was the first sinus infection Ive had since I can remember. It seems to be gone for now.

[annekat]

I seriously heart you guys so much! Thanks for being so awesome with all the helpful replies! Today is the first day since Friday I don't feel like I have the flu, no sinus pain still have mild temple tenderness/pain. My eyes look a little red but don't feel too bad. I swear this has been happening for 2 months now, fine for a week, sick for 5 days then fine for a bit, sick for a bit. Such a roller coaster. If the blood work comes back normal what would the next step be? I really don't think a nasal biopsy would show much. The "sinus infection" I had was only around for a month and a half and that was the first sinus infection Ive had since I can remember. It seems to be gone for now. I agree a sinus biopsy might not show much but could be kept in mind in case things get bad in that area later. Maybe the ANCA. Or just see someone to discuss it, once your insurance kicks in, whether or not you are feeling sick again. The off again, on again feeling of illness is fairly typical of "smoldering" WG. Not sure what to say about the temples. There is a form of vasculitis called Temporal Arteritis or Giant Cell Arteritis, which affects the temporal artery and ocular nerve, I think, not sure, but I know someone with that who went blind in one eye.. If the eye and temple issues remain, I'd go to an eye doc, although I didn't at the time, and it turned out OK. Good luck with it all!

[lag713]

If I were you, I would schedule a visit with your doc for the date your insurance kicks in. Given the nonspecific symptoms, you could have anything. It's the old expression- If you hear hoof beats then you should think of a horse (common) not a zebra (rare). There are probably a great many things that could cause those symptoms. I would try to relax. Be open and honest with your doctor about your symptoms but you should let your self-diagnoses go. They went to medical school and have a certain level of expertise that we as patients will never have. We have an expertise in our own experience of the disease but that is not enough to help you diagnose yourself.

If it gives you comfort to get started with blood tests now so that you can bring those results to the doctor then by all means do so. I wish you all the best in finding what is wrong and getting well soon. I sincerely hope that you do not have Wegeners.

[MCC]

Hi, step away from the self diagnosis sites! It is only going to lead you to have massive anxiety about what's wrong with you, whilst conclusively giving you nothing.
Symptoms of Wegeners are similar to lots of other diseases...the doctors thought I had all manner of things before I was finally diagnosed. I don't feel it does you any good at all worrying yourself even sicker about what is wrong with you. Wegeners is uncommon, so probably it isn't that.

I would do as Iag73 suggests "If I were you, I would schedule a visit with your doc for the date your insurance kicks in." Good luck, and try not to worry.

[vdub]

Ditto what MCC said. Just one question, tho. You pee'ing a lot?

[drz]

Thank you so much for the replies! As of right now my main symptoms are no appetite (i've lost 6 pounds in 2 months) very tired, red mildly irritated eyes, slight pains on the sides of my head, and overall achy/ crappy-ness. I feel really weak too but Im sure thats due to not eating. I also feel like i cannot get enough to drink, my mouth goes dry pretty quick. No real sinus issues at the moment, its so frustrating. The weird thing about all this is when I was having sinus problems I just had pain in the sinus areas, no real congestion. Is that normal? Also, any suggestions on making yourself eat? I know I need to but I just feel like barfing at the thought. I think the doc is pushing for the CT of the sinus but I can see if he can give me some more medrol. That might not be a bad idea. I think the insurance might kick in around 3 weeks?

What does "Find a Zebra" suggest for a diagnosis. Wegs was my number one suggestion for diagnosis but my diagnosis was confirmed already by the time i heard of this web site to check for possible explanations for my symptoms. Remember there can be several or even many possible diagnoses for most clusters of symptoms and some times it is very frustrating experience and takes a long time to get the correct one. Best wishes.