New WG patient

[itdracing]

I guess i didn't pay that close of attention prior to the meds, as i hurt all over then. When i bring it up to the Doc, he says not joint pain and moves on. I am asking for a referal tomorrow at my appointment. We did call Mayo and were told they are not accepting any new patients in the Rhuemy field at this time. The owner of my company is trying to change that, he has some pull i guess. Just have to wait and see. I just wish i could have 2-3 days in a row of feeling 75% (lowering my standards no, used wish for 2-3 at 80%). Instead i get 75-50-60-60-70-50-50-60-70-60, kinda reminds me of high school tests all over again. Since i started on the meds i might have had 1 or 2, 80% mornings followed by 60% afternoons, and 50% evenings. Just gets madening. Sorry, just needed to vent a little.

[Sangye]

Did you call general rheum or the Wegs docs listed on the VF site from Mayo? I've never heard of any vasculitis center refusing patients but general docs at the big hospitals often refuse new patients.

[elephant]

Itdracing you are more than welcome to vent...we all do at some point .....I am so glad you are calling someone...If Mayo doesn't work out... you will like the Cleveland Clinic. Sangye is right I have never heard of the Vasculitis center refusing patients.....keep plugging along....glad your here!

[pberggren1]

Hi itdracing:

I was diagnosed in 2003 - fairly fast onset and almost died.

I have had lots of joint pain over the years with WG but mostly during flares. Sinus involvement ( more mucus, crusting, and bleeding and post nasal ) and joint pain and fatigue and the main first symptoms when I am having a flare. I don't know what to suggest for the joint pain but I feel that the Azathioprine is not strong enough for you and that Cyclophosphamide is in order.

There is another guy on here by the name of Jeff whose Son has WG and lives close to Green Bay. They go the Mayo Clinic in Rochester and see Ulrich Specks. He is one of the best WG experts in the world!!! I highly reccommend that you try and get to see someone like that.

If you want to call me my numbers are 306-971-7086 and my cell is 306-774-5801. I have a long distance bundle with each pnone so I can call you as well if you give me your numbers.

I am 33 and love bowling as well.

God Bless,
Phil Berggren

[JanW]

I say the same, itdracing. I have an ENT who is on the VF site and when I called his office in the afternoon I was seen for the first time the very next morning. I have never had to wait (he is now my surgeon) and if anything these docs are anxious to see vasculitis patients because there are so few of us and we add to their body of knowledge as well. My ENT is always working on papers --- in fact he and an anesthesologist on his team are submitting a major study of the very surgery I had.

[Doug]

Mark- I concur with the need for a biopsy to verify the original diagnosis of WG. (A sinus biopsy in your case, or wherever there is organ involvement.)

I concur that you need to find that WG specialist at Rochester to help you work through this disease the most efficaciously.

I concur that your wife must be in on this WG team working to bring you back to your new normal. Any doctor who treated my wife like a talking lump probably would have had a "discussion", initiated by me as the patient, about the critical nature of family support when a patient has a life-threatening disease. You, as the patient, however, are dealing with the fatigue, the decreasing energy level during the day. Shame on your doctor! New doctor. Just do it. Or settle for a promise he will treat your wife as a partner in your treatment, that she will be treated with respect when she asks questions. Oh yes, and he will give her professional answers. No, just get that second opinion and try to find a more engaged docotr because you will be involved with him or her for years.

I just feel uncomfortable with a doctor who fails on social graces. As a patient, a husband, you have too much, TOO much on your plate right now to train a doctor to show appropriate respect for your wife, the one person most likely to feel personal impact from your disease. Dump him, please. If you feel it is the decent thing to do to let him know why you've moved on, do it.

Each weggie heals at his or her own pace. Your early diagnosis is a good sign for a relatively early return to some level of normal fairly close to what you used to call normal: early diagnosis means you haven't had as much tissue damage as some of us have had. That's my guess. When that day comes, the day you feel healed, regardless of what the tests say, it is a day you might just have an hour cry with your wife once again- only a cry of joy! Believe me, the moment is overwhelming.

Sorry for my usual rant, folks! (Dump the doctor. My final advice.)

[Col 23]

Hi Itdracing
I take Osteo Panadol 665MG, it really helps with the pain in the joints, I take intially 2 every 8 hours which leaves me a bit tired then I reduce to 1 every 4 hours if Im going okay. Sometimes on bad days I just keep taking 2 every 8 hours. Hope this helps.
cheers Col 23

[Col 23]

Hi Mark
Im also new to WGs and totally confused. However Im still grappling with my Rheumy as she is also quite abrupt and Im thinking of changing. Trouble is im still researching where to go and who to see. Im going to have a chat with my doc about options in a few weeks. The blogs on here have been helpful in making this decision. Sometimes we dont always write down whats on our mind but the info and experience I read really helps to clarify alot. Best of luck with everything.
cheers Col 23

[Jack]

Sometimes we dont always write down whats on our mind

The great thing about this site is that you can do exactly that and people will not jump in to judge. I don't think I've ever read an unkind word.

[elephant]

We are not a judgemental group, were all in this together and Hey we have it tough and we don't need any more grief! I love helping people and also I am learning from everyone on this forum. Today I am not 100 % because I am still recovering from my surgery, so I still enjoy just reading every one's comments.