Hi all from ohioweggie in Austintown

[ohioweggie]

my story, I was diagnosed in2002, as with so many of us this was after 1-1/2 to 2 yrs of running to various doctors to find out what was going on. my initial involvement was in my kidneys and see a nephrologist on a regular basis. he is very good and follows up regularly, but seems to only be interested in what is happening with the kidneys and as you all probably experience I have questions about other things that are happening. after approx 2 to 2-1/2 yrs of meds I was kinda in remission until recently. Im now in a flair up and back on medication. I definitely feel that my sinuses are involved and my nasal passages are a mess! I have an appt with an ent but concerned that many professionals are not familiar with WG. Im glad to have found this forum, look forward to more helpful info!

[Pete]

Merry Christmas, Ohioweggie!

Fortunately, you're not far from one of the best treatment centers for GPA/Wegs at Cleveland Clinic. I hope you call and make an appointment soon. I see Dr Alexandra Villa Forte in Immunology & Rheumatology. Others on the forum see Dr Gary Hoffman or Carol Langford. They're all excellent.

Keep us posted on how you're doing!

[Alysia]

Hi and welcome,
I am sorry that you are flaring now.
over the years since 2002, were you in remision ?
what meds are you on now ? what is the treatment plan for you ?

[Debbie C]

Hi and welcome,we are about neighbors.I live on the west side of Youngstown. I have probably seen you in the stores around town. I would love to meet up and talk and exchange info. The drs. I see here in town say they treat other weggies but I have yet to see one in the waiting rooms. I also go to Cleveland Clinic to see my reumy. I am in remission right now (thank God ) so I don't have an appt to go back up right now. My ent is Dr. Potesta on Glenwood Ave. he is a really nice guy and is familar with wg. I always go to Austintown St. E's to have my blood and urinlysis done.Glad you found the group and hope you get back into remission.And let me know if you want to meet somewhere.

[annekat]

Welcome to the forum, Ohioweggie! If you are not sure you have the right docs, you are lucky to be where you are because of the Cleveland Clinic mentioned above. And do get together with Deb, we would love to see pics of the two of you! Please continue to participate in the forum and keep us updated!

[mishb]

Hi Ohioweggie and welcome.

Gosh there are a few here from Ohio now......you all need to get together for a weggie party. :hug3:
I have no idea on the size of Ohio but presume that a party could be possible

Ohioweggie, I hope you get to see someone at Cleveland Clinic - it sounds like an amazing centre, to be part of.

[ohioweggie]

hi debra, I was born and raised on the west side! I went to cleve clinic back when wg was first active, didnt really think they helped me more than what we were doing here. I see dr Soliman at the kidney group, dr kruti shah for thyroid, and have an appt with dr beck, ent in jan! I also go to st e 's in austintown for all my blood work. I think it would be good if we could meet sometime, maybe we could set something up. do you work? I'm retired and pretty much available.

[ohioweggie]

hi annekat, dont do pix, have prednisone face. :razz: lol!

[ohioweggie]

thanks all for your posts. it helps to know you are all out there to exchange info and ask questions. which brings me to a question? I ve been experiencing sharp pains in different parts of my body, wondering if this is WG?

[Pete]

Short answer is "probably". Better to get it checked out than let things deteriorate.

[annekat]

hi annekat, dont do pix, have prednisone face. :razz: lol! Oh, I understand! Maybe some time in the future when the moonface is gone. Most of all, would like to hear that you and Deb got together and had fun!

[windchime]

Hi and welcome to the forum. Ditto what everyone else has said. I would also suggest that you see a Rheumatologist. They navigate the disease as a whole. They deal with more of the systemic issues like fatigue, muscle and joint pain, etc. and see that you are referred for the the areas such as kidney, sinus, and lungs. Your rheumy should work closely with all your other docs. You will begin to develop a team of docs to help you travel this rocky path we call Wegener's. Good luck and keep us posted.

[Debbie C]

If you are having pains all over you should get checked out,like Pete said. When was the last time you had your bloodwork done ? I also go to the Kidney Group on Belmont and I see Dr. Pandya. He is very well educated on wg and he tells me more than my reumy at Cleveland Clinic. Do you have a reumy here in town ? I will pm you my info and maybe we can get together after the New Year. I live right next to Mill Creek Park (in fact my house is surrounded my the park ) Hope you feel better soon.

[ohioweggie]

I grew up on glacier ave, which deadends at the park. spent many hours in millcreek, and still occasionally go to fellows riverside gardens.