Hey new from MD, bad speller too.

[leahrubyred]

:rolleyes1: So, I have had it with doctors, not giving up and need to reach out and remain pro-active. So far everyone I have interacted with has been amazing and I look forward to more positive energy. My name is Leah (ofcourse) and was diagnosed w/ WG in June of this year. I am an artist, mom, friend and a spit fire. I am Also always here for anyone who should need ANYTHING. Nice to meet you guys, new doc I am meeting today (yes, I NOW almost have interviews with physicians) little nervous, but, we shall see... Leah p.s. thanks again

[misskay]

Hi Leah... glad you made it here :)

~Stacey~

[Psyborg]

Welcome to the forum

[Sangye]

Hi Leah, I hope you got my email answer. Glad to have you in the group!

[DEE]

welcome to our group DEEx

[JanW]

Welcome to the group, Leah. Please write more about your case when you can!

[elephant]

Welcome and good luck Leah.

[leahrubyred]

Thanks again everyone......Crummy day , although I feel pretty good today, to be more specific... I am a pulmonary pt. Legions in both lungs and staff in my blood. Removed port I had and put me in the hospital for 3 months (in SC) I have since moved to MD and no no-one!! I thought I would get better care here, but have hads some trouble, as stated above, (ty Sanje) I took ur advise. I have flair ups and am currently on .............*DRUM ROLL PLEASE* cYTOXIN AND PRESINSONE. Responding meh, 1/2 n 1/2. tried some imuran. one month and dissaster. I am now traveling back and forth between SC and MD 10 HOURS!!!!!!!!! To see docs. I never quit and hope and am somewhat reassured from what u all have shown me so far I am in the right place. Doc today put back on cytoxin and pres until I see new docs in a few weeks. I am getting dizzy, figuratively. All my love and blessings to you all. Leah

[Sangye]

You will get much better care here in Maryland if you go to JHU. You'll have to do your best with a PCP unless you want to see one at JHU, also.

Which doc did you see today? Also, they should not be using a port unless it's an absolute emergency. That's because Wegs is a vasculitis (inflames blood vessels) and because we are immune-compromised. Ports are a major source of infection.

[leahrubyred]

LOL, Found that (ports) out the hard way. All of that has been removed. I am also having crowns, and implants removed on the 10th going to falsies. Getting rid of ALL possible souces of infection. saw two today actually, internist and another specialist. Took me off imuran and back on c&p regime as I said, until the new ruemo sees me at the end of Jan. I wish the surgeon who put it in thought of that, they just wanted convienence. Things like that are what led me here, and made me start educating myself in all ways possible. Plus, we LOVE the library in my house. =) Do you know a good internest @ JH?

[leahrubyred]

LOL, Found that (ports) out the hard way. All of that has been removed. I am also having crowns, and implants removed on the 10th going to falsies. Getting rid of ALL possible souces of infection. saw two today actually, internist and another specialist. Took me off imuran and back on c&p regime as I said, until the new ruemo sees me at the end of Jan. I wish the surgeon who put it in thought of that, they just wanted convienence. Things like that are what led me here, and made me start educating myself in all ways possible. Plus, we LOVE the library in my house. =) Do you know a good internest @ JH? Sangye, u r one of my new heros. ty so much

[leahrubyred]

Learning curve

[leahrubyred]

sorry for quote, although I would love to be quoted one day.........learning curve.:rolleyes1:

[Sangye]

LOL Thanks for the hero comment. You'll learn a lot and become a hero for others, too.

So your appt with a Wegs doc at JHU is at the end of January?

I don't know any of the PCPs at JHU. I've considered going there for one, though. It would simplify things for me in some ways.

[leahrubyred]

I tried one there @ first and I ran out in tears, so without a recomendation, I am sticking around here. It was awful. It wasted precious time as well. Let me know and I will let u know if I find someone amazing. Yes, JH @ the end of Jan. Yeah!!!!

[Sangye]

Which doc are you seeing at JHU? They might have suggestions for a good PCP. Dr Seo had several to recommend (based on his patients' satisfaction), just no one in my area.

[marta]

Welcome Leah,

Hope you find the same solace and strength that I have found here. This is a great place to be if you're a Weggie. It's a very empowering forum in a very unempowering situation.

[chrisTIn@]

... was diagnosed w/ WG in June of this year.

Hi Leah. I was also diagnosed with WG in june.
Good luck with getting the proper treatment,
hope your nervousness will go away.

[elephant]

Hi Leah, I am from SC, are you seeing docs still in SC?