Cleveland Clinic - advice please

[Chris G]

In a nutshell, my current treatment does not seem to be working. I see rheumy's at the Univ of Michigan. They do treat wegs patients, but as you all keep saying, we need to be seen by real wegs specialistists. So, I would like to seek an appointment at the Cleveland Clinic.

I see that CC has a form on-line to request an appointment. It looks like I can just fill that out myself, or am I wrong......does CC require a referring physician? What should I expect once I do that? Will it be months before they can fit me into their schedule? Will they assign a doc, or can I request Dr. Langford (you all seem to rave about her)?

It seems that many of you go to the specialty centers once or twice a year, and then see a local doc in between. I don't want to sever my relationship with my current docs......so most importantly, how do I do this diplomatically???

[pberggren1]

I would get your doc to refer you you to Langford as soon as possible.

[aewaustin]

Once I had the referral I was able to get in a few weeks later to see Dr. Langford. I ended up staying at the Intercontinental Suites, which was pricey $159 (with clinic discount, included free wifi), but it was so convenient to be on campus. Also I had an awesome driver, that just picked me up from the airport and it was less than a taxi, was only $40. His name is Alfred and his number is 216.577.4730 (tell him Anna from Austin, with the weird disease referred you). If you have a choice of an appointment earlier in the day go for that, my appointment ended at 5pm and everything was closed for scheduling after that.

[aewaustin]

And my local doc that referred me to Dr. Langford is working with Dr. Langford to implement my treatment plan. Dr. Langford called her to discuss and they will work together on my plan for now and in the future. I will see my regular doctor here in Austin, and guess that I would just go back up to see Dr. Langford if I need it, but am not at that point yet so not sure...

Anna

[Chris G]

All good tips - thanks Anna. How many days were you there?

How did you go about asking for the referral without ruffling feathers? My docs are not garden-variety rheumy's who've said that they need a consult, or another opinion. They are at a major medical center, and seem to know what they're doing, but I'd feel better having a real weg specialist's opinion.

[aewaustin]

I flew in on Monday, Dr. Langford does her new patients on Tuesdays, and then I was able to leave on Thursday morning but that was pushing it. I had tickets back on Friday and Saturday just in case, and moved one of those up to Thursday. I flew SWA and they don't have change fees so it worked really well.

My doctor in Austin actually got the referral for me without us discussing, huge blessing for me, but did not realize it at the time...

Not sure what type of relationship you have with your doctors, but I would think they should be supportive of you wanting to meet with Dr. Langford and wanting to be seen by someone that specializes in such a hard to diagnose disease. You could always just try calling the clinic directly too and seeing what luck you have, but keep in mind your doctors will need to send a history with you to Cleveland so they will be involved either way. Best of luck!

[Rose Cozzette]

All good tips - thanks Anna. How many days were you there?

How did you go about asking for the referral without ruffling feathers? My docs are not garden-variety rheumy's who've said that they need a consult, or another opinion. They are at a major medical center, and seem to know what they're doing, but I'd feel better having a real weg specialist's opinion.

I did not have a referral to see Langford, just called the clinic and set it up w/o any problems. was there one day. they were very thorough and spent 3 hrs. there. I mainly wanted 2 things, to be in their data base and to see if my program was on track. I also wanted to be a study case but they said they only study us when we are really sick. I still think they should study us for past history and what has worked other than traditional methods, holistic or otherwise, I felt I had my say and they seemed to listen. I did have to send all my medical records in advance, which was abt 3 ins. thick. :}

[Sangye]

I really wish they would do a study on past history--exposure to toxins, vaccines, parasitic diseases (eg malaria) and repeated infections. I understand that with Wegs there is little time to deal with the past and everything has to focus on proper treatment. But I do wish someone could do a general patient survey to include the above factors.

[Psyborg]

If you don't have to see Dr Langford specifically you can get in faster. All the Weg's specialists there have worked with Dr's Hoffman and Langford and are on the ball.

[drz]

I really wish they would do a study on past history--exposure to toxins, vaccines, parasitic diseases (eg malaria) and repeated infections. I understand that with Wegs there is little time to deal with the past and everything has to focus on proper treatment. But I do wish someone could do a general patient survey to include the above factors.

Can't they just do chart reviews on present and past patients to search the databases for such info. Any of the Vasculitis centers must have several hundred patients in their databases. This would be a great thesis or research paper for some medical social worker, epidemiologist, nursing doctoral thesis etc.