Cleveland clinic

DBT
  • By DBT · September 13, 2012 at 1:00 pm · 15 replies
  • In Treatment decisions
  • 0 Recommend      
    Options
    Options:
  • Shared with the public

My dr maybe wants me to go to the cleveland clinic. I have sarc in lungs spleen and parasinus. I have nerve pain, but we dont know if we can tie to sarc. Is there a better Dr over another that I should try to see? Since I cannot take prednisone, I really need a doc thats willing to try some different from the norm things. thanks

Explore topics in this post

Explore topics in this post:

15 replies   

alliweb

I see Dr. Culver at the Cleveland Clinic. He and is PA are great. They really take their time with you and try to help. They are also wonderful in returning my phone calls whenever I need something. As far as the prednisone, it was not the first thing he tried for my sarc. Their is many different options as far as medications goes.

dbry

I also see Dr Culver. He's really great, very nice and caring. He doesn't really like prednisonne, I was on it before I went to him, and he's still weaning me off, he tried me on remicade. It didn't seem to work, but now comparing some of the xrays, it may have decreased some of the nodules, now I'm on leflumonide for inflamation.

m2000

the 2 main docs are Culver and Parambil. I see Parmabil and he is wonderful. I know a few people who go and they try to put them in with different drs.. I would tell them you only want culver or parambil. they will figure out your nerve issues, they figured out mine. I am also on the leflunomide, i like it better than methotrexate.

DBT

I went to te doc today. He gave me some steroid nasal spray for my parasinus sarc that is giving me massive headaches. Man, I am sooo done with this disease. We are checking my ACE levels and sed rate. My ACE levels have been around 90 for the last 6 months. I havent taken anything for the sarc since I became completely intolerant to the pred since it started giving me the upper right quadrant pain and making me feel sick. We discussed making a try at cellcept and maybe oin ahead and trying to get to the cleveland clinic. Ive always been a mystery when it comes to my symptoms, so I never get my hopes up. I am going to try to see Culver. I have no idea how long it will take to set it up and get in to see him. Im in DFW TX area. I havent found any doctor in my area that know much about sarc. thanks guys

m2000

i bet the clinic will get you in within 4-6 weeks. they will want your medical records and stuff sent to them and then they will get back to you with an appt. i guarantee that they mystery that drives you crazy they will at least solve it and give you a plan

wildjane60

How far is Cleveland? There is also a hospital for Sarcoidosis in Denver. National Jewish, that is considered good too. I loved Cleveland Clinics for my husbands auto-renal transplants and hypercalcemia, but not so much for sarcoidosis. I think that bad part about Cleveland Clinics is that if you don't live near to it, you go there, and get tested , they try something , and you run out of money and the ability to get to Cleveland. That is what append to me I just saw a woman, locally who worked at Walter Reed, and was very familiar with Sarcoidosis. She is doing studies in Scandinavia. She told me she saw a lot more of it than gets reported in the records. She thinks it is some kind of exposure related thing or hypersensitivity--I know who cares--just get rid of it--but she also felt that sun exposure and D exposure really exasperate it for MOST sufferers. I felt very confident when she told me that she felt I was finally in remission. I think someone close who cares, will do research. listen, read the literature, do the tests, and I will repeat LISTEN to you and who is nearby and available is better than the "experts". I know this is controversial, but unless you have something like my husband has where there was NO other choice, I think as in most things, local, nearby, and committed beats "expert". Just my opinion.

alliweb

It took me 6 weeks to get in but now that I am an established patient, I can call and get in the next day if need be.

wildjane60
  • By wildjane60
  • Reply 3377960 · In reply to 3376290 by alliweb
  • September 15, 2012 at 3:06 pm
  • Report post

The problem for me isn't getting an appointment, it is getting to Cleveland. If we go to Cleveland it is a 7 hour drive and then we have to find a place to stay and pay for the gas there and back, find someone to pet sit. etc etc. It is frankly too far for us to use on any type of regular basis. I think this makes it difficult for the doctors good as they are to get a handle on all the changes and variations that go on with this disease. I think for me, it is easier to figure stuff out for myself and to try and find a local group of doctors that includes the ones I need. For me that means :
GP (geriatrics in my case)
Opthomologist
Gynecologist
Rheumatologist
Pulmonary Medicine
Neurology
Cardiology
Dermatology
and Orthopedist.

There is a very local rural tertiary care hospital/Health care center that has most of these. No "real" experts in sarcoidosis but they deal with Judson at Albany Medical Center , in Albany NY which is close enough and hour and a half. Yes Cleveland has the "experts" but that doesn't help if you need help like "now". So I like to do a once or twice a year with Albany/Judson and then have them send all the stuff to the locals. One of the local pulmonary docs is on board with my thinking that I am sun/D sensitive. So I feel confident that if I have a problem and have to go to the hospital or see a doctor, it will be tomorrow. It will be no more than a one hour and a half drive at MOST, they will have all my records, I won't have a problem if a test takes a week to come back (hotels , waiting, driving, flying-when I really shouldn't be) That is my problem with Cleveland is just too far to be reasonable for a changing disease that has its tweakings needed. It is a big deal to get there. If I were going to have to be hospitalized for any length of time I might consider it because it is an all in one tertiary hospital, but as I found when my husband was there for 3 months 2 separate times, I was alone in a hotel room, without support and it cost us an arm and a leg in pet care, and hotels, and it was not possible , even there to leave a hospital ized patient unattended. Mistakes are always made if family is not there ON TOP OF IT. Even there the nurses are overwhelmed and overworked. You have to stay, and if like us you live far away, are you able to fly or drive there for a week, go home, come back for follow up in a few weeks and for treatment a few weeks after that? That was it for us. Okay so i get less than "expert" care maybe-depending on what you feel about Judson. I lost confidence in Parambil with the Mega doses of D and I feel I was proven right , at least for me. So, I would consider how you can get the best in seamless care between disciplines, be willing to do my homework , understand what the labs and other tests mean and demand excellence where you are. Bloom where you are planted unless there is no care where you are. Just my opinion.


There is a really local hospital

IreneMarie

This is a collection of sarc docs in TX from old posts here.

Texas
Houston

http://www.texasmedicalcenter.org/root/en/TMCServices/News/2011/09-15/New+C enter+Treats+Immune+Disorders.htm
The University of Texas Health Science at Houston has opened a center devoted to researching and treating auto-immune diseases.

The new Frank C. Arnett, M.D. Center for Autoimmunity and Immunobiology bears the name of the retired UT Medical School rheumatologist known for his research into autoimmune diseases. Arnett retired as a professor last year.

The new center, directed by John Reveille, M.D., is housed in the UT Physicians rheumatology clinic, 6410 Fannin, Suite 450. Within the center are multiple disease-focused clinics, including the Vasculitis Clinic, the Scleroderma Program and Clinic, the Spondyloarthritis Program and Clinic and the Lupus Clinic.

{Appointments can be scheduled by calling (713) 486-3100

William Irr, Neurological................. (713) 795-4785
Alexander Stadnyk, Pulmonary...... (713) 799-9916
Susan Wittenberg, Ocular Immunology (Eye Dr).....(713) 668-6828
Dr. Teller, Dermatology.....................(713) 661-4363
Brian Wang, ENT................................(713) 796-1300
Carlo Hernandez, Psychiatry............(713) 523-0058
William Irr, Neurological................. (713) 795-4785
Alexander Stadnyk, Pulmonary...... (713) 799-9916
Susan Wittenberg, Ocular Immunology (Eye Dr).....(713) 668-6828
Dr. Teller, Dermatology.....................(713) 661-4363
Brian Wang, ENT................................(713) 796-1300
Carlo Hernandez, Psychiatry............(713) 523-0058

Dallas
I see Doctor Gary Jones at the HEB hospital. He has helped
me out tremendously. I am finally off pred. and on an inhaler. He is a pulmonologist
Ut Southwestern in Dallas, Tx. Her name is Laura MD.
Dallas - Dr Dennis Goldsberry - opthamology
Dr Ronald Underwood - cardio
Dr Alan Shulkin - pulmonologist - one of the foremost authorities in the nation on lung sarc.
Dr Don Cheating - rheumatology
http://www.texasmedicalcenter.org/root/en/TMCServices/News/2011/09-15/New+C enter+Treats+Immune+Disorders.htm

The University of Texas Health Science at Houston has opened a center devoted to researching and treating auto-immune diseases.
{Appointments can be scheduled by calling (713) 486-3100.
robert.cahill@uth.tmc.edu}

Regards,
I.

m2000

wildjane... you have to do whatever works for you. For me to work with local doctors is just not an option. for 10 years local doctors in 4 different states misdiagnosed me (including johns hopkins) local doctors do not see the amount of patients that the experts see, they do not do research, they do not have the funding.. I am sure Natl. jewish in Denver is good but I have read some of their literature and they don't have the same stance on sarc as my doctors, but I would still go to them if i lived in Denver its an awesome hospital. take care

wildjane60

M2000:
yeah, if I had the money I would probably still go to Cleveland. We just found the distance made it impossible for any kind of meaningful follow ups. My tests go up and down all the time and I need a tweak here or a test there. I found myself having to cancel all the time because we just didn't have anyone to stay with my MIL or we didn't have money to stay three days in a hotel, or gas money for an 800 mile RT, or our car wasn't in shape for the trip, and we were down to one funky car after my husband had to leave our van there, sold it for $100 because for medicare to pay for his mother's cardiac rehab she had to get to the hospital in upstate NY in less than 12 hours and it was during the floods of hurricane Irene and tropical storm LEE. He honestly didn't make it but banged on the door until they let her in after losing the car and 14 hours in the car. I was also misdiagnosed at Cleveland Clinics in Nephrology so it can and does happen even at good places. My husband HAD to go there because it was the ONLY place they do what he needed but for me I do not want to take 50,000 units of vitamin D when my 1,25 is already high normal and I get really sick nd lose kidney function and get hypercalcemic with it. So for me , I have no real issues with CC and think the are really good for some stuff, but in my case I feel that I do better with a more local provider connecting to a closer tertiary center. ALbany med is coordinating my care and they are only 1 1/2 hours away. Dr Judson is also as well known as Parambil, but was okay with NOT prescribing the D and understood why I wouldn't take it. Our local hospital is rural health care started under C Everett koop and s used to dealing with Albany med. SO the rheum is at AMC , I have a local cardiologist, and a AMC cardiologist. I have a local Pulmonary med doc and Judson. I still have to go to NYC for dermatology but they are good at coordinating locally too. It is all in NY. So I was just saying and Irene Marie seems to bear this out, that if possible, if you don't have lots of money for travel and hotels, that it is possible to piece together good local care. Yes, it takes more "leg work" but if you don't have the money to travel continuously to Cleveland what are you supposed to do? I am glad that it is working for you and that you feel comfortable with it. FOr me I always felt disconnected and since one of my main areas is cardiac, emergencies arise and I need someone familiar with my situation right away and can't just run off to Cleveland. So I guess everyone has to do what works for them. If got sick to the point of needing the level of care my husband needed , I think I would rent out our house and rent one in Cleveland for the duration. There are companies that arrange this. We flat out just can't afford it to travel even monthly.

m2000

wildjane I totally hear you! we cant travel up there as much as we would like and you still have to have drs for those emergencies at home, my hospital nearby i dont trust except for small emergencies so that worries me, but so far so good:) i am just glad you are getting care, thats what matters

DBT
  • By DBT
  • Reply 3382199 · In reply to 3381116 by m2000
  • September 17, 2012 at 9:46 am
  • Report post

I figured that once I went to CC for a few days and they did tests etc... the doctor would work closely with my PCP to treat me on different meds if I had bad reactions to another drug. There isnt really any way that I could make going to Cleveland often. I really just gave up on docs around here. My sarc seems to be stuck in cruise control. My ACE stays around 90. My SED rate has been 5 or so the last couple of years. My PCP is great but he just doesnt know much about sarc. Im not even sure if some of my problems are the sarc or something else. Thanks for the dr refs Irene. Im open to all and any suggestions on doctors that a sarc knowledgable in Texas. Im in the Dallas/Ft worth area. Ive seen doctors that were downright ignorant when in comes to sarc. It would be nice to see a dr that understands the whole vitD issue with sarc also without me having to explain it to them.

wildjane60

M2000
thanks , yes, that would scare the crap out of me not trusting the nearby hospital. That was kind of the case until recently. I am (knock wood ) in remission. Having the cardiac thing was the scariest part about being so far from CCs. The what ifs really made me very anxious. I feel a bit better now, and I do have Judson at Albany Med if something really strange comes up. My fear was ending up in a local er with a-fib or a stroke and them having zero idea about what was going on with me and being unable to get to Cleveland. I think if it came to that I would move if I could. I hate having to explain it all to some ER doc where I have no written explanations in my chart and no cardiologist to call.

wildjane60

Hey DBT,
yes that was great IreneMarie had such a great list. You still might run into the D issue, but I think many are coming around. You can aways "just say no to D" if you know it is bad for you. I know for sure it is bad for me. TIme tested and no more thanks. I had enough. It took me 8 mos of avoidance to get back into remission, it was surreal and weird , and i was never really sure, but worth it in the end. I took no meds either, that was the extent of it.

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Start a new discussion

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders