Finally Going to CC! :)

[rebekah]

I just scheduled an appointment with Dr. Langford! I know, it took me long enough... I've been doing well, so I decided to try to go back to school this semester. I hadn't had a flare in about a year and was down to 22mg of pred and really thought my health was on track. Well, of course that didn't happen. I flared and started Rituxan the end of August, right when classes were starting. Even going through a flare, I thought I could focus on my health and balance school and work, but I was totally wrong. Trying to focus on anything school related on 50mg of pred was impossible. I bombed the first exam and being on so much pred made a rash decision and dropped the class. I absolutely regret doing that, but I guess now I can be proactive in managing my health. Hopefully, we can come up with a plan where I can get below 20mg of pred without flaring. I just want my health in a good place so I can take the pre-reqs and eventually get through grad school.


My doctor said she would get in touch with Dr. Langford for a consult, but I figured since I'm so close it would be a good idea for me to just go up to Cleveland. Can anyone tell me what to expect? Is it an all day appointment, or since I have blood work and tests done regularly will she just go based off of everything in my medical record? I'm nervous but excited for this appointment.

[Pete]

When I first saw Dr Villa Forte, I spent almost two hours with her providing a detailed health history and full details about my wegs experience. Gave her a urine sample during the appointment which she personally analyzed. At the end of the appointment, she sent me downstairs for blood work (c- and p-ANCA, sed rate, etc.). I was at the clinic for about three hours.

You should get parking info as part of your pre-appt package. Driving time from c-bus is about 2:15. I usually allow 2:30-2:45 driving time.

The clinic has MyChart, so you should sign up for it while you're there.

Hope you have an excellent experience.

[mishb]

Yes, it's about time.

I'm looking forward to hearing of great results from you

[Debbie C]

Glad to hear you are finally going. You will love Dr. Langford. She is very professional. You will spend at least a couple of hours with her. I don't know if she will send you for bloodwork or not. Since you have your copies she may not. What day are you going up there ? I have an apt with her Oct.21 at 1:00

[rebekah]

I have my appointment on November 18th! I thought for sure she would have been booked for a few months, but I'm glad I can see her soon. I wish it was the same day as you, Debra - it would have been great to have met up with you!

[Debbie C]

They also have a cancellation list that you can ask to be put on.

[Jaha]

Rebekah,
I am glad that you got into Dr. Langford. I wish you all the best in getting the Wegs back in control. I agree with Pete and Deb about the length of your appt., according to whether she will want her own blood work or maybe a CT scan. You might want to start writing down your history in your own words. They ask so many questions and it is good to have notes to look at and remind yourself, so you don't leave things out. I am wishing you all the best with a plan to reduce the preds and put the Weg's dog at rest. I will be up there on Nov 17th to see Neuro and Vascular doctors, I wish it were the 18th, I could have met up with you. I'll be up there on Tues, the 29th of Sept. to Gastro, if anyone is up there then.

[rebekah]

That stinks that I'll just miss you. But that's a great idea to go to the appointment with everything written down! I better start now... I don't think I can remember everything that's happened. Thankfully, my rheumy's notes seem to be very thorough so that should really help Dr. Langford. I hope your upcoming appointments go well! :)

[annekat]

Congrats on the appointment, Rebekah! :thumbup:

[brokenangel]

Hi guys...on d blog afyr a lonng tym. .I really need ur help n support guys. ..in feb ds yr I ws hosp in icu fr 105.6 feverbof unknown origin...nw agn last mnth I gt admit..my ophtgal ref me to a reputed rheumy out here in india fr eye scleritis...he lut me on methotrexate. .wd dat my luver enzymes elevated n he put it on hold...my disease aggravated by dt tym n scleritis went onto necrotizing scleritis. .sclera melted out choroid n retina detached..lost my vision..nw devlpd infctn in dt..planning fr removing the eyeball dts wt drs say option wice...due to uncertainty of infect in eye dey still dint put me on immunosuppressive .meanwhil I strtd gtng pain in nose aroubd bridge..gt pns ct dne..put on host of antibiotics. ..nw d pain goes onto ears n throat..stil drs cdnt figur out wat was it. ..lung ctcshws nodules. .nw put on cytoxan but still d drug dsnt seem to hrlp..pain is excruciating. .m helpless totally owing to pain..dr wants me to tk rituximab but m scared of losing my lyf to it..read a lot of articles dt way...pl help

[annekat]

Hi guys...on d blog afyr a lonng tym. .I really need ur help n support guys. ..in feb ds yr I ws hosp in icu fr 105.6 feverbof unknown origin...nw agn last mnth I gt admit..my ophtgal ref me to a reputed rheumy out here in india fr eye scleritis...he lut me on methotrexate. .wd dat my luver enzymes elevated n he put it on hold...my disease aggravated by dt tym n scleritis went onto necrotizing scleritis. .sclera melted out choroid n retina detached..lost my vision..nw devlpd infctn in dt..planning fr removing the eyeball dts wt drs say option wice...due to uncertainty of infect in eye dey still dint put me on immunosuppressive .meanwhil I strtd gtng pain in nose aroubd bridge..gt pns ct dne..put on host of antibiotics. ..nw d pain goes onto ears n throat..stil drs cdnt figur out wat was it. ..lung ctcshws nodules. .nw put on cytoxan but still d drug dsnt seem to hrlp..pain is excruciating. .m helpless totally owing to pain..dr wants me to tk rituximab but m scared of losing my lyf to it..read a lot of articles dt way...pl help Broken Angel, you might get more attention for this post if you start your own thread about it. Also would be easier to read if you'd type out full words instead of texting-style shorthand. I'm sorry you are having these awful problems. It could take a few weeks to see improvement from the CTX, and I don't think you should be afraid of taking RTX. I haven't, but many on here have, with good results, although it also takes some time. I think CTX is a little faster. It, too, carries risks, probably a lot more so than RTX. I think all of our meds carry risks, but they are better than the alternative of no treatment, which would undoubtedly be fatal.

[brokenangel]

Thnx anne...but hw do I post it in my thread here..

[annekat]

Thnx anne...but hw do I post it in my thread here.. Glad to help. At upper left of page, click on Forum. That will take you to all the categories like General WG Chat, Medications, etc. Pick the one that best fits your post and click on it. That will take you to a list of posts, then click on Post New Thread at top of page. That will give you a screen on which to write a title and type up and submit the first post of your new thread. I hope that helps. (I'm on a laptop and don't know if other devices might have the screen arranged any differently.)

[blu4runner]

Best of luck with the appointment at CC and with your school.!!