Newbie introduction

[LisaT]

I posted a new reply and a pm to you this morning Susan. I can't find them anywhere now! Sorry if you didn't receive. Dr. Kur's nurse said to have your GP call his office and they will get you in to his rapid access clinic. 604-875-0880. If your doctor won't do it, ask your pulmonoligist. But either should you need treatment. If your doc refuses to help when you know a quicker way to get treatment that is pure negligence with this disease. Their infusion clinic and staff are amazing. Can't say enough good things about how pleasant they made a new and somewhat nerve wracking experience of getting my first infusion. More later after a good long nap. I'm so sorry you didn't get this info earlier. I don't know what happened. I was a bit dopey from benadryl but I was sure I had posted.

[Susan55]

I received your msg this morning and got on the phone right away. First I would like to say THANK YOU for speaking to your doctor, your amazing and I truly appreciate it Lisa.
I called my family doctor's office and they called back saying I didn't need a referral as he is sending me to see someone already! OMG OMG OMG
Then I called my lung dr and left a msg. I asked to speak with her but she is very busy I was told. When I went to the ER a few days ago the doctor there make a referral for me to go see a doctor as the Jim Pattison "internal Medicine Rapid Access Clinic" I was hoping to get a call today but didn't.
I am so frustrated that I can't get in sooner to see a doctor to get the diagnose and move on with treatment. I feel I am going in circles and hitting brick walls no matter which way I turn. So, just sitting back and waiting for the phone to ring.

I can't take the mid back pain any more, very sick to my stomach, not hungry, stomach hurts when I eat and just don't feel well and oh the fatigue is bad

One day at a time and try to smile each day until I get this all dealt with..hope it comes soon

Thanks again Lisa and hope the new treatment works well for you xoxoxox

[LisaT]

Hi Susan, no problem at all.

Did your doctor tell you who he's sending you to and when they would call? It doesn't make sense that you didn't hear from them if they finally made an urgent referral. Same with the rapid access clinic, emphasis on RAPID. I know it's frustrating and exhausting. I would call them all again until someone understands that you can't wait another day and sees you right away. You should not be suffering so when your first couple doses of prednisone will give you some relief, and as soon as they sort out which other meds to give you, you will hopefully be on your way to feeling better. Being busy is not a good enough reason for a doctor or their staff to ignore or refuse to speak to someone urgently inneed of care! I would call back the pulmonologist's office amd tell the staff that, busy or not, she MUST call you back, you've been diagnosed with Wegener's and given no treatment and are getting worse. Explain the trouble you're having breathig and at there are rapid access clinics you can be seen at right away and just need a referral. It's unconscionable that you're being brushed off and treated like a nuisance when medical professionals know or should know that time is absolutely of the essence here.

I personally think you may be better off at Dr. Kur's rapid access clinic than an internal medicine clinic, as he and his staff have a lot of experience with Wegener's patients, and rheumatology is the specialty that does so. They know exactly how to apply for and get you funding for the medications you'll need, amd have a beautiful cozy infusion suite set up to monitor and carefully administer the doses. I felt in very good hands there yesterday and would love to see you get that same care and peace of mind. I didn't have to deal with any administrative details or red tape regarding the funding for rituximab, they did it all for me in coordination with the drug company, and got it covered by MSP, my extended health insirer, and the drug company's program that fills the gap for people on disability income. But maybe your doctor is not sure of the diagnosis and feels your GI issues need an internal medicine doc. Either way, someone just needs to see you asap. Please let me know if i can help in some way. I'm just home resting. Since your doctor treated you like a child and spoke to your brother about you rather than speaking to you, maybe it would help if your brother called and said, my sister is getting worse, she needs to be seen urgently, there's a Wegeners specialist who can see her urgently and you need to make the referral NOW. We can't wait another day and will hold you responsible if she suffers any permanent damage while waiting for you to get her some help and treatment. It's worth a try.

[Susan55]

Hi Lisa

Well some good news!!!!! I just called the Rheumatologists I am to see on Sept 25th " Dr. Dhindsa" in Surrey. I just called there and told them I was in the ER on the week-end and the doctors there said I need to see her ASAP. I now have an appointment on Monday Sept 11 at 9:30

Wow, I am getting in soon. The reviews on this doctor are not good, so if I don't like her I will go see Dr. Kur for a second opinion. I am just happy I will get in on Monday. Hope she doesn't treat me like I am crazy. Her reviews is she doesn't listen.

I am just wondering if I go to see Dr.Kur would it be days or weeks to get in, this is the problem I am having...grrrr

I am so shocked how I've gotten the run around and no calls back from doctors. Yes, my blood works states positive for WG, but my family doctor said it still has to be confirmed by a rheumatologist so we shall see what Dr. Dhindsa says on Monday. I hope and pray she is NOT rude as all the reviews state she is.

Now, it's count down for me to get an answer. I don't have the runny nose...I have back pain, chest tightness and SOB that just comes and goes, feet and legs feel tight and hurt. Hips, knees, elbows and shoulders hurt so bad. I get dizzy very easily and want to pass out. Very sick to my stomach and just not hungry. Just don't feel good, hard to explain.

I'm sure my COPD is not helping if I do have WG. Did you experience dizzy spells? OH and when I get my stomach swells and hurts so bad. I have crazy things happening. I've had blood in my urine for over 3 yrs and doctors say some people just had that, I don't think so.

I will see if my brother can go with me, but so afraid this dr won't listen to me...so we need to find out just how fast I can get in to see Dr.Kur..(if I can get a doctor referral that is)

I hope your having a good day today Lisa. Do you have people around to help you? Are you able to drive? I haven't driven since February as I get these crazy dizzy spells
You will be the first one I will msg to tell you about my dr's appointment on Monday.
A part of me thinks it's maybe no WG as I don't have the runny nose,oh I don't know anymore. My head is spinning in circles right now. Over the last two years my family doctor has me believing at times I am nuts...lol Trying to be funny

Well I am so happy right now, Monday is the big day for me

[Alysia]

Hi Sue, I am glad that they can see you on Monday and that you can have the alternative of Lisa's dr.
Meantime I think that you must check your creatinine in your blood test. When was the last time they checked it ? How much it was ? If it was more then 2-3 weeks ago or above the normal, ask your family dr to give you referal to check it asap so that you can have the result before Monday. Dont take "no" for an answer.

[Susan55]

Hi Alysia

I just checked my E-Health and when I was in the ER on the week-end they checked for it and from what I can see it's normal.
Here it is:

Creatinine was 72 , so I am guessing it was normal

[Alysia]

Hi Alysia

I just checked my E-Health and when I was in the ER on the week-end they checked for it and from what I can see it's normal.
Here it is:

Creatinine was 72 , so I am guessing it was normal

Yes. It is normal. Thanks God.

[Susan55]

I just read the results again and it reads.

Positive for PR3-ANCA and neg MPO-ANCA by EIA. This pattern is seen in patients with active WG and not involving the kidneys

[Alysia]

I just read the results again and it reads.

Positive for PR3-ANCA and neg MPO-ANCA by EIA. This pattern is seen in patients with active WG and not involving the kidneys

Positive C-anca which goes with positive PR3 - is found among people who have WG and also among those who have Crohn's disease, btw. I am not sure if it indicates anything about kidneys involvement or not.

P-anca which goes with MPO is not found among people with WG but among people with other vasculitis diseases, like mpa.

[Susan55]

HI Alysia

It's amazing how much you know about this. My head is spinning and trying to understand it all. So what is the difference from WG vs MPA?

I just can't wait for my appointment on Monday with rheumy and see what she says. Then I got a call yesterday for another appointment to see "Internal Medicine" doctor for Monday Sept 18th. I am keeping both appointments and see if they say the same thing. This has been going on for so long and I don't think having two opinions would hurt.

Sorry for all my questions I keep asking. I want an answer so bad so I can deal with what ever is happening.

Thank you Alysia for helping in answering so many questions.

Love this group