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.

[Daggar]

Received a bunch of literature from Holly's clinic today.... I'd like to read the papers they keep referring to.

"There is some evidence that an infection, for example caused by a bacteria, might start the process."

There must be data to draw from to make these comments? Sorry! Kind of going back to my old thread about the doctors and patients being so busy with treatment ... we may be missing something.

It'd be nice if there was a way to gather all this data under one roof and analyse it to find a common thread.

Sangaye --- no sprouting of kidneys anytime soon:huh:.... of the all the organs the kidney is the most complicated. I guess they already regenerate bladders from tissue samples in an incubator for children.... so who knows? Also reading a magazine while there - for anyone suffering from cataracts:

A new study conducted by Canada and Sweden has shown that biosynthetic corneas can help regenerate and repair damaged eye tissue and improve vision in humans.This study is important because it is the first to show that an artificially fabricated cornea can integrate with the human eye and stimulate regeneration.

Amazing stuff... gives you hope!

[drz]

Received a bunch of literature from Holly's clinic today.... I'd like to read the papers they keep referring to.

"There is some evidence that an infection, for example caused by a bacteria, might start the process."

There must be data to draw from to make these comments? Sorry! Kind of going back to my old thread about the doctors and patients being so busy with treatment ... we may be missing something.

It'd be nice if there was a way to gather all this data under one roof and analyse it to find a common thread.

Sangaye --- no sprouting of kidneys anytime soon:huh:.... of the all the organs the kidney is the most complicated. I guess they already regenerate bladders from tissue samples in an incubator for children.... so who knows? Also reading a magazine while there - for anyone suffering from cataracts:

A new study conducted by Canada and Sweden has shown that biosynthetic corneas can help regenerate and repair damaged eye tissue and improve vision in humans.This study is important because it is the first to show that an artificially fabricated cornea can integrate with the human eye and stimulate regeneration.

Amazing stuff... gives you hope!

My Mayo Clinic news letter recently had a case where they constructed an new bladder for some one who lost theirs to cancer. Some day one of us might benefit from one of these ground breaking ideas.

[Sangye]

Wow, I had no idea they could regenerate a bladder. How amazing!

[drz]

Wow, I had no idea they could regenerate a bladder. How amazing!

I don't think it was regenerated, just creating surgically but it was functional and avoided an artificial one or the usual plastic bag thing and catheter insertion.

[RCOSSIO]

Regenerate a bladder..wow when I was on Cytoxan, I sure could have used an extra bladder. With all the fluids I was drinking...I tell you that me and toilet were inseparable.

[Daggar]

just amazing.... one article from back in 2007 "Time" and one last year


The Science of Growing Body Parts - TIME (http://www.time.com/time/health/article/0,8599,1679115,00.html)


Growing New Organs for Babies With Birth Defects : Healthymagination (http://www.healthymagination.com/blog/growing-new-organs-for-babies-with-birth-defects/)

[Sangye]

Love your new avatar, Richard! :thumbsup:

[RCOSSIO]

Thanks Sangye

[Rose Cozzette]

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. well you can see I agree heartedly that they need to get more studies done. I think we all are willing to be studied. a friend of mine is having severs sinus problems and is worried she has Wegners. it is so dry and windy in CO that everyone seems to be having these problems. we have such a polluted environ. that we all are toxic. perhaps we should as a group just keep at the research centers until they hear us, inundate them with requests to study us. who knows?? no one has ever done a comprehensive study on my past history before the Wegners. I think the key is there.

[Daggar]

I don't believe we were asked anything beyond the typical health questions about the immediate family during the diagnostic stage -- but then again we were pretty rattled during the entire process and may not recall?? I know Marta has done a survey on this site -- its too bad we couldn't extend that to become part of a package for anyone newly diagnosed. We were told that the province of Alberta has the highest rates of pediatric WG in Canada but they're not sure why. Could it be the dry climate - altitude - chinooks/ever changing climate - industry???

Richard - trade you some skiing/snowboarding and the paleness for some beaches/boating and the tan!! This has been a lllooonnngggg winter!:crying:

[delorisdoe]

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.


I think I may not be the only patient like me...meaning if you dont ask me I am not likely to volunteer it. I will see several doctors in one day with the first one being the resident. After the resident I see his trainer-the wg specialist. after that I sometimes see the pulmanologist that originaly diagnosed me. He always asks me more questions than the other two and then when the first two come back they sometimes mention that I did not tell them-well they did not ask. I think my point is my files would not have all of the info they would need.:cool1:

[Sangye]

I definitely have never been asked a detailed history of my past diseases, toxic exposures, etc.... I don't think my JH docs even know I lived in Africa and had tons of vaccines and multiple parasitic diseases.

[Rose Cozzette]

I don't believe we were asked anything beyond the typical health questions about the immediate family during the diagnostic stage -- but then again we were pretty rattled during the entire process and may not recall?? I know Marta has done a survey on this site -- its too bad we couldn't extend that to become part of a package for anyone newly diagnosed. We were told that the province of Alberta has the highest rates of pediatric WG in Canada but they're not sure why. Could it be the dry climate - altitude - chinooks/ever changing climate - industry??? Dagger, I will trade you for some moisture, our wind and dry for yours. lol dry as a bone here.

Richard - trade you some skiing/snowboarding and the paleness for some beaches/boating and the tan!! This has been a lllooonnngggg winter!:crying: Dagger, I will trade you some snow for our wind and dry! this dryness really messes with my sinuses, have to stay inside more. :{

[Rose Cozzette]

I definitely have never been asked a detailed history of my past diseases, toxic exposures, etc.... I don't think my JH docs even know I lived in Africa and had tons of vaccines and multiple parasitic diseases. I guess since I worked in the med. field I dont wait for them to ask me questions. from my experience they will only slow down and listen when we make them. very irksome but when they tell me they are so busy I say so am I, trying to live! gets their attention momentarily anyway. :{

[Sangye]

LOL I definitely don't wait for them to ask me questions. But it just isn't something that interests them or they'd have it in their history.

It's completely opposite in holistic medicine. Any time I've talked to a holistic doc (or even nutrition sales rep) about Wegs, the first thing they ask is "What is your history of toxic exposure?"

[Daggar]

The sinuses seem to be the most common infliction.... is that usually the first thing to indicate a flare-up/disease activity or is it an ongoing issue from WG damage?

[pberggren1]

For me historically the nose and sinuses give me trouble right away with a flare but usually it is more fatigue and sometimes joint pain.

[Sangye]

Daggar, there's no pattern to flare-up symptoms between different people and sometimes not even within the same person. I don't have sinus involvement but from what I've learned sinus symptoms can mean one of 4 things: 1) Active Wegs, 2) Lingering, low-level Wegs activity that doesn't require changing/initiating treatment, 3) Damage from Wegs, or 4) Infection.

I am very fortunate in that Wegs activity shows up in the exact same pattern every time. It's kind of spooky, actually.

[elephant]

The sinus symtoms are the worse, that is what I am going through right now. My sinuses hurt so bad, I thought I had a tooth abscess. Then denist thinks its a bad sinus infection. I see the ENT and my local Rhuemy this week. I need to get to the bottom of this. So I think I might have 1), 2), 3) and 4)!

[Sangye]

Elephant, I hate to hear that you're suffering like that. I hope it's an easy fix. :hug2:

[DEE]

Oh dear Elephant I hope they can help you soon DEEx :hug1::hug2::hug1:

[drz]

The sinus symtoms are the worse, that is what I am going through right now. My sinuses hurt so bad, I thought I had a tooth abscess. Then denist thinks its a bad sinus infection. I see the ENT and my local Rhuemy this week. I need to get to the bottom of this. So I think I might have 1), 2), 3) and 4)!

My sinus infection and bronchitis improved greatly after ENT sucked out sinuses and I took a 6 pak of antibiotics. I also had an ear infection too that burst both ear drums. Using sinus rinses several times a day also helped. I also got a steroid nasal spray to use for bleeding in nasal passages or sinuses. The symptoms are not totally gone yet, but much improved. Hopefully they will disappear soon before the antibiotic wears off. Before treatment it hurt behind my eyes just to turn my head when in bed and really hurt in my ears if leaned over. Hope you can get some treatment soon to help relieve the pain and discomfort.

[elephant]

I saw my Rheumy, today and I will have to make an appointment to see Dr Langford soon, just to see if I need any changes in medication. The antibiotics are taking care of most of my symtoms. I have to wait till Friday to see my ENT. Thanks everyone for the support!

[Sangye]

Glad you're getting some relief!

[Rose Cozzette]

The sinus symtoms are the worse, that is what I am going through right now. My sinuses hurt so bad, I thought I had a tooth abscess. Then denist thinks its a bad sinus infection. I see the ENT and my local Rhuemy this week. I need to get to the bottom of this. So I think I might have 1), 2), 3) and 4)! in Jan. I had a sinus infection and recognized it as such cause thats how all this started for me, so got into doc that day and put on strong antibiotics which stopped it. whew! still have sinus probs but are getting less. think the weather and air affect it daily. sorry to hear you are having probs, does seem to go on, hope it gets better. :biggrin1:

[DEE]

Take care of you Elephant hope you get sorted soon DEE x

[elephant]

I saw the ENT and my left maxiallary is very swollen, but he thinks it is damage done from the WG. Had my sinus cultured and will see what grows in a week. Still taking antibiotics. Thanks again.

[Rose Cozzette]

I saw the ENT and my left maxiallary is very swollen, but he thinks it is damage done from the WG. Had my sinus cultured and will see what grows in a week. Still taking antibiotics. Thanks again. hope you are feeling better now. I keep wondering how much damage is done to our sinuses that is permanent. sigh...:unsure: take care, Elephant.

[elephant]

Thanks, my sinus is feeling better. I have been using Veramist for the past week.

[drz]

Thanks, my sinus is feeling better. I have been using Veramist for the past week.

I found a warm mist humidifier to be very helpful with my sinus infections. It is easier to use than old fashioned steamers and just as effective.

Is Veramist a nasal spray?

[Palmyra]

Thanks, my sinus is feeling better. I have been using Veramist for the past week.

I hope that means your tooth issue is resolving or gone away? It can be quite the conumdrum to differentiate between the two.....

[Rose Cozzette]

Thanks, my sinus is feeling better. I have been using Veramist for the past week. glad to hear it. kidney doc says I am in remission now. and cont to decrease the preds slowly, have more aches but will persevere cause I want off it! got bone scan back and have increased bone density 3-5%. so am feeling better, need to as we plan to move as soon as our house sells to be closer to family. feel like I can handle all this now for first time in over 2 yrs. whew...:biggrin1:

[Sangye]

What great news, Rose. :hug3:

[elephant]

That is great news Rose! The Veramist is a steroid spray, I am using it every other day. It causes dryness of the nose and then you start to bleed...It can cause glaucoma too. It is not a perfect drug.

[Rose Cozzette]

That is great news Rose! The Veramist is a steroid spray, I am using it every other day. It causes dryness of the nose and then you start to bleed...It can cause glaucoma too. It is not a perfect drug. ah for a perfect drug... lol I quit using nose sprays because they caused bleeding and being on blood thinner it was a problem. have any of yur who are on cellcept noticed more moles or changes in them? I am seeing this. and know the cellcept can cause growths. thank you all for your good thoughts. you are my lifeline! :biggrin1:

[Chris G]

My ENT has put me on Rhinocort Aqua. He wants me on that one because it's water-based - won't dry my nose out. Good news/bad news thought - there's no generic, and it's costing me 50 bucks!!

[Sangye]

have any of yur who are on cellcept noticed more moles or changes in them? I am seeing this. and know the cellcept can cause growths. thank you all for your good thoughts. you are my lifeline! :biggrin1:
Rose, you need to see a dermatologist and have those checked. Some of our drugs (esp pred) cause hormonal changes which can affect moles and some growths, but our drugs also predispose us to cancer. Please get checked asap.

[Rose Cozzette]

Rose, you need to see a dermatologist and have those checked. Some of our drugs (esp pred) cause hormonal changes which can affect moles and some growths, but our drugs also predispose us to cancer. Please get checked asap. I intend to!

[Rose Cozzette]

Rose, you need to see a dermatologist and have those checked. Some of our drugs (esp pred) cause hormonal changes which can affect moles and some growths, but our drugs also predispose us to cancer. Please get checked asap. have an appt with doc for the noles. and the cellcept is decreased to 1000mg a day, am glad for that!