Sad Panda

[NikkiNicole]

The process of trying to get on better meds is really getting me down. My doctors never have appointments that I can squeeze in between shifts at work and then, I get one, and an emergency happens at work and I can't go. Such is the life of a 911 operator/Sheriff Dispatcher. I'm calling to make another ENT appt for next week because this week is a wash. We are so short staffed with sick calls and already being short on bodies that there is no way I can get in.
I went to the ENT a few weeks back and he insisted that my dizzy spells were just migraine related. Hilarious since I don't get migraines. I was prescribed medications and my rheumy said "Just give them a try so we can see if it works" well ... the medication made me even dizzier. I opened the little pamphlet and read the information and the first most common side effect of said migraine medication was dizzy spells. Hmmm, how was this supposed to help my dizzy spells again? So I emailed my rheumy and said "I can't take this! It's making things worse!" and she called over to ENT and told him he needs to see me and look into my Wegener's issues (i.e. swelling in my sinuses). Obviously, there's swelling. There's massive amounts of pain ... and my face feels full. Yes, I am not congested but every time my rheumy has peeked up my nose she says it's inflamed.
I have to see him in order for her to proceed with a switch of medications to something a bit more heavy hitting, like RTX. I understand this because of the toxicity. I am not presenting with life threatening symptoms, I get that. I understand that there needs to be a justification to put me on something so toxic. Yet, at the very same time, I am getting completely frustrated and want to feel normal.

I am fighting a cold, which is something that came on after I went to the ENT the first time. It's an awful one and ust when I felt it was going away, I started to feel a bit awful all over again. Everyone at work is horribly sick ... so I am sure if I get over it, I'm just going to get it right back!!!

I'm just sad. I'm sad that this continues to make me feel like ass. Pardon my French.

[annekat]

Rats. I'm sorry that your plans for dealing with your WG and related symptoms are not falling into place. I keep reading more about dizziness and there are so many possible causes, but I have run across statements linking WG to a greater likelihood of having it. I get tired of hearing about docs who just pick a cause out of a hat rather than go to the work of really investigating what might be going on. I hope it gets better, the people at work get well, etc.... And it's easy for me to say not to worry about the toxicity of RTX, since I'm not taking it, but there have been so many on here who have done so without issue and gotten better as a result, and ALL of our meds carry risks.... so I think maybe your rheumy is being little too cautious........ Best of luck in getting things going in a better direction.

[Birdie]

I went to the ENT a few weeks back and he insisted that my dizzy spells were just migraine related. Hilarious since I don't get migraines. I was prescribed medications and my rheumy said "Just give them a try so we can see if it works" well ... the medication made me even dizzier. I opened the little pamphlet and read the information and the first most common side effect of said migraine medication was dizzy spells. Hmmm, how was this supposed to help my dizzy spells again?

I'm just sad. I'm sad that this continues to make me feel like ass. Pardon my French.

When first diagnosed I went through doctors with listening disorders faster than a bartender washes shot glasses. If I didn't get a good initial exam, I didn't go back. The doctors I kept impressed me immediately and kept doing so as long as I had insurance.

What does "ass" mean in french?

[Birdie]

I get tired of hearing about docs who just pick a cause out of a hat

I had an ENT walk into the exam room with a prescription in hand. Never laid eyes on me before, didn't ask a single question, didn't look up my nose, nutin. Explained the treatment for a Wegener's patient in a couple seconds and then walked out. What do you suppose the odds are that I either filled the prescription, or made a second appointment? He looked good compared to the first urologist.

[NikkiNicole]

I'm hoping to get in next week and have him actually stick the tube up my nose ... not that its pleasant but at least he will actually be looking instead of just assuming. I swear, the ENT appts make me feel like the biggest hypochondriac in the world. The ENT docs and certain ER docs. It's got to the point where I might not go to the ER when I should because I don't want to be talked to the way that they do when I am there. You know what I mean??

[MikeG-2012]

I had an ENT walk into the exam room with a prescription in hand. Never laid eyes on me before, didn't ask a single question, didn't look up my nose, nutin. Explained the treatment for a Wegener's patient in a couple seconds and then walked out. What do you suppose the odds are that I either filled the prescription, or made a second appointment? He looked good compared to the first urologist.

BZZT! Wrong answer doc! TIME TO FIND ANOTHER ONE!!!

Honestly, I don't know why anyone would continue to go to an ENT that is not taking the Wegeners in his/her patients seriously. If I had an ENT that never looked in my at every visit, I'd be shopping for one that would!

I am so blessed to have a great ENT, and he and I have become "battle buddies" (his words) over the past three years. Here's his profile page: Dr. Anthony Rogerson

[Birdie]

It's got to the point where I might not go to the ER when I should because I don't want to be talked to the way that they do when I am there. You know what I mean??

Yes Nikki, we ALL know what you mean. Some doctors are obviously bad. Sometimes it's the system that makes them unable to do good. Your job is to figure out which group each doctor fits into. If it's the system then you can speak up, be forceful enough to wake them up and actually get health care. If it's the doctor then it's your job to run away from them and find a good one.

Regardless of all other factors, ASK to have a sinus swab & culture done. If they haven't done it and you've had constant sinus issues, then it's way past time to find out if you've got stuff growing in there. I went six months and only got it done by yelling at the ER doctor. A fever of 105 wasn't enough. Snot like string cheese a foot long wasn't enough. Just being in the ER for the seventh time with the same issue wasn't enough. The system, and many doctors, are asleep at the wheel, just going through the motions like flipping burgers at McDonalds. They forget that the customer ordered no tomato, all burgers get tomato.

I keep getting the feeling from you that maybe... you're a little bit quiet & timid? That's very nice and sweet in a social situation. But damn.... your health care is not a social event. Get loud! Tell the doctor you're part of the equation and they have to listen to you. You MUST be heard to get care. No doctor can properly treat you without hearing your symptoms (actually listening) as well as hearing about their own blunders (Migrane Nikki?).

Now... I think you're not dizzy enough so you may want to take your migrane medication. See, even I can be a doctor.

Bug hugs,
Gary

[Birdie]

I am so blessed to have a great ENT

You're lucky. I didn't find a good one. Instead I opted for the option of not having any more serious sinus issues. I reccomend it, much easier to deal with.

[Alysia]

Dear Nikki. I am sorry. it is too much pain for too long. I think that you also need to ask for CT of the sinuses. they can see the inflammation in it more clearly. sending my prayers.

[whatthewhat]

Forgive my bossiness...Imma 'bout to go all mom on you... But, YOU have a right to call in sick. You ARE sick. You have a very serious disease that can steal important things from you like hearing (and it would be hard to work as a dispatcher then) or kidney function (and making time for dialysis appointments is not any easier than ENT appointments).

I believe my daughter has "little" symptoms that tell of major things on the horizon. For her, one "canary in the coal mine" is her skin. Tiny little sores, that the first time, pre-diagnosis, I and the pediatrician just wrote off as teen blemishes (although she doesn't get them.) The second time, before her flare last fall, the dermatologist saw it right off the bat and then biopsied to confirm - even the experienced rheumy pooh-poohed the derm, but within a month our girl was in the hospital fighting to save her kidneys. I think the dermatologist is a crucial member of my daughter's medical team, even though the skin is not as vital an organ as her lungs or kidneys. Your sinus issues might be like that.

I think I'm fortunate to have spent a couple dozen years around twelve-step meetings listening to how a disease can be progressive, silent, waiting. I think in fighting WG offensive positions are key, because sometimes when patients realize it's on the move it has already gained too much ground. :-(