An enlightening day

[LilyPony]

Per my big plan, I made an appointment at one of the GP clinics associated with the hospital that has a vasculitis department (that was a 3-6 month wait for appointments). I had a 9:00 appointment with new GP today, who reviewed all the records I have, recent bloodwork, etc. I was immediately sent for a new chest xray since I wasn't able to bring that. I now have 3 rib fractures from recent coughing, as opposed to one fracture on the last xray, but lungs still look fiine.

Magic was pulled and they had me in the vasculitis department at 2:30. I saw a young, new doctor who is part of the department but all cases are reviewed by the entire team so that was fine for an impromptu visit. Various bloodwork that was already done (sed rate, anca, something else) came back as not quite right, but not indicative of an active flare by any means. They will be monitoring this closely.

Yes Jack and y'all, I know you've all hear this before, BUT she thinks there is a strong possibility that I have asthma. Not adult onset, but something that I've had all along. I am having a harder time exhaling than inhaling, which is apparently more consistent with asthma. My flow (i think that's what it was called) was on the slow end of normal. I am getting a chest MRI to check for various wegs signs and complications and a follow up with pulmonologist if any significant results. I've started on Singulair to see what happens with that.

She was somewhat concerned with the bruised appearance of the eyelid on the wegs eye, but really didn't know what to make of it because it's surrounded by normal skin - will be discussed and next steps figured out.

And the joint pain, she thinks it's more consistent with fibromyalgia. I have pain in various key places when they are pressed. She said it's very common for fibro to coexist with any other autoimmune disorder. If I can get some good night's sleep and get my butt moving again, I should begin to see an improvement in my discomfort. If it's wegs related, it won't ease with sleep.

So, I was sent home today with instructions to take the singulair plus another coughing medicine (forgot the name) and I am to return next week. If anything changes for the worse, I need to call and will be seen ASAP. I also have some meds to help me sleep and something to ease the horrid rib pain I'm obviously having.

I may be trying to be overly optimistic but feel like I was finally handled by competent people today and hope to get to the bottom of it soon!

[Sangye]

I'm glad you got started and that you're going back next week. It's not unusual even for Wegs specialists to think symptoms are conditions other than Wegs. Maybe they're right but I have 3 concerns about what they said today:

1) I've never heard of someone coughing so badly from asthma that they break ribs.

2) You can have normal ESR, ANCA and even CRP (probably the other test you referred to) and still have a Wegs flare. ANCA is completely unreliable-- they should know that. My ESR and CRP don't increase until I'm ready for the ICU. It happens with Wegs.

3) A chest CT is the standard diagnostic test for Wegs, not an MRI. They're not interchangeable.

[Jack]

Agree with Sangye, also - I think you could do with a bone density scan. I have advanced osteoporosis and also a permanent bad cough, but even I don't break ribs through coughing, only by leaning on them.

[LilyPony]

I went to my notes and it is a CT scan not MRI. They're interchangeable in my memory I guess! A bone density scan is in the longer term plans but not in the next few stages of work ups. I thought the rib breaking was bizarre from asthma but she said that anytime you have chronic hard coughing for 3+ weeks, especially women, you are at high risk for rib fracture. I know I'm probably in denial but haning on to what optimism I can!

[Lightwarrior]

I agree with Sangye and Jack. The asthma dx doesn't fit the broken ribs. Is there a reason why they didn't order a CT??

[Sangye]

Okay-- glad to hear it's a CT. A lot of people switch them in their minds! As long as the docs don't, it's alright.

We don't want you to lose optimism or hope. We just want to make sure you're assessed and treated properly. Many of us have walked down the road of "This isn't Wegs" and know it well. I admit there's still a piece of me that thinks/hopes my Wegs doc will tell me one day "You know, I just don't think this is Wegs. I think we've been wrong the whole time."

[elephant]

Lilypony, hope the Lung CT goes well. I agree with the rest of the bunch. I always like to give my two cents too.
Sangye, funny you mentioned that ...I fantasize that I really don't have this....and it's all in my head, but NO I am reminded daily that I have it! Darn it!

[JanW]

Chiming in to say that I agree with the others on here -- I'm concerned that you are breaking ribs over coughing and, like Jack, I think you should have a bone density scan. They are quick, fairly cheap for the doctor to order and kind of important before they start you on long term steroid therapy (if that ends up happening). The doctor needs to have a baseline on you before treating you with drugs that further weaken bones.

It's true that a harder time exhaling can be more indicative of asthma, but I'd still worry that you have a lung condition related to WG, vs. asthma. I'm the person who was misdiagnosed for five years with asthma and have been on just about every drug for it, so I'm always a little worried when people throw around asthma, fibro, RA, when what they are looking at is the many, many, faces of WG.

[Lightwarrior]

So...........is the part of the CNS symptoms of Wegs?? (LOL) that someone will tell us we are wrong and we really don't have it?? I thought I was the only one hoping for a mis dx (yes, I know that denial is not a river in Egypt)

[Sangye]

The past couple weeks I've been having more nose symptoms. This last week they really increased. When I got adjusted at my chiropractor's yesterday, the nose pain improved tremendously. So my mind has TRIED to go wild with the thought "Maybe holistic treatment is really the answer." I won't allow it--remembering that the adjustment helped me regulate my immune system so that the Ritux could work better. But man I tell ya...I've had to really sit on my mind to get it to be quiet today, especially since today's ritux infusion has me feeling unbelievably bad. :D

[elephant]

I am glad to hear that the Chiropractor's adjustment worked, mabey you need to go back. Sorry you are not feeling well. Does the infusion make you feel like you have the flu or just really tired?

[Sangye]

Way worse. Like a reverse blood transfusion with severe weakness. I can barely lift my arms to shoulder length. Typing is exhausting.

[elephant]

One more question...Does this affect everyone like this?

[Sangye]

I don't think it's universally like this. (Surprise!) I've read about a handful of others who got the same treatment and were not like this. Like i said, I'm not sure how much is due to the huge hit of pred since it has such a deleterious effect on me. I think if it were universally this bad, my Wegs doc would have warned me for sure. He did seem a little puzzled by how hard a time I had in October, so I'm assuming it's not the norm.

[Sangye]

I just talked to one of the nurses in the infusion clinic. Since they do ritux a lot, I asked her what she's noticed. As expected, it's all over a country mile. There are numerous conditions for which ritux is used, so that makes a difference. She mentioned a Weggie who gets ritux and reacts like me. But it's working so well for him he says it's worth it.

I think it is, too. If it can get me my life back, losing 5-6 weeks is a small price.

[elephant]

See Sangye you are looking at the broader picture. Great attitude. Are you feeling better today?

[Sangye]

I feel a bit less like death than yesterday. I also haven't moved more than 10 feet, though.

[elephant]

That is good to hear. Can we erase the white chalk around the cat now? :)

[Sangye]

LOL-- not so fast. This happened last week. I was at death's door the day of the infusion, better the next day and then went back to visit death once again for the next several days. I'm not letting myself think about tomorrow-- it might be good, might be bad. The only thing that's certain is that it's not here yet.

[elephant]

I tried to wipe the chalk but it was white chocolate.....??? I guess when your better you can have a treat on the floor. :) :o )

[Sangye]

As I watch my dogs blissfully gnawing on raw beef neck bones, I think I'll stay off the floor for awhile. I'm pretty slow moving and they've got blood in their eyes....