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For those that have been to the Cleveland Clinic

HopeNicole
0 Recommendations

Has anyone had any bad experiences with the cleveland clinic? I have read alot of gud things about them, but was just wonderin. becuz i am trying to get an appointment there.

Explore topics in this discussion:

Pain Prednisone Sarcoidosis Methotrexate

17 replies

DoreenC

I go to the one in Weston, Fl. They have been great.
I'm heading to Cleveland soon to see Dr. Culver and my docs here will continue to consult with him.

Best of Luck,
Doreen

DoreenC

I go to the one in Weston, Fl. They have been great.
I'm heading to Cleveland soon to see Dr. Culver and my docs here will continue to consult with him.

Best of Luck,
Doreen

alexxsky

Hi this new for me ,been diagnosis since Sept 29,I hope this the spot to write all this new, mine is in the lungs, liver ,and orginally diagnosis by my dermatologists he was treating for a bad case he thouhgt was eczma, but i had been having all kind of promblems with bacteral infections respy infections bacterical,sinus,plus ,i worked in a chemical oil lab ,but my doctor pulled me out ,my doctor is with cleveland clinic Dr Barry Brooks.I did find a support group South Point Hosp 2nd Thursday very month.

carosu

Yes, I went to the Cleveland Clinic and my experience was good. I saw specialists in pulmonary, dermatology, rheumatology, and opthamology....and was treated with respect...listened to....and diagnosed.

If you have any issues not related to the sarcoidosis... they will find them. You can leave there with the assurance that everything has been done that will insure a correct diagnosis.

When you go home you will need a doctor who is willing to communicate with the doctors at Cleveland Clinic. Unfortunately, there is no cure for Sarcoidosis and, in fact, there are no medications that may not be worse on your body than the disease.

My eyes, skin, and lungs are affected. I have put together a team of doctors who are willing to communicate and we are trying a plan of treating symptoms with less invasive means than high doses of prednisone and methatrexate. Cortisone shots around my eyes when they become inflamed, topical lotions on my skin, and mainly, the move to a place near sea level. (I no longer need oxygen supplement since my move from 6700 ft elevation!)

So.... if you haven't gotten a positive diagnosis....CC is the best place to go. Call Karla Peterson at desk A90 for an appointment.

Read my journal entry today for my best information on how to live with sarcoid.
I wish you the best. Carole

carosu

I found Dr. Culver to be sensitive, caring, knowledgable, interested, and kind of sad that he didn't have a "magic bullet" to cure me. (he is also very handsome) carole

HopeNicole

Is he in w the pulmonary? Did they find out wat u wanted them to?

Minneyshoes

Hi HopeNicole,
I have been to CC several times to see Dr. Culver and a few other doctors. I will be going back to see Nuerologist on the 9th of Nov. It is a long drive for me but well worth it. They really know what they are doing.
I have a lot of faith in them.
Good luck to you! and God Bless.
terrie

HopeNicole

How long did yall have to wait to get an appointment?

Raleighnat

I'm going to the CC to see Dr. Culver on Nov 12th. I have an unusual presentation - multiple lesions of my vertebrae - that have been biopsied as 'caseating granuloma'. This usually indicates infectious disease but I've been cleared of that...so sarcoid has become my diagnosis by exclusion. However, I really want to nail my diagnosis down.

My local Dr. in Raleigh doesn't really know what to do other than continue pred and then go to methotrexate and monitor lesions on follow up MRI's. I told him up front that I intended to go to CC and he was really cool with that. I just called for an appointment...my local Dr. forwarded all of my records. I had to make quite a few phone calls to make sure they had everything they needed, but it wasn't that hard. They scheduled me out about 4-6 weeks from when the process started.

kmb

Hopenicole
I called the Cleveland Clinic twice about a month ago. They said they would call me back. I have yet to hear from them. Maybe you need to be persistant. Let us know how it goes.

nitt121

Absolutely love them... My boyfriend has been involved with them for the last year and he has done a tremendous turn around!!! Thank you cleveland clinic

BrianORyan

I was dx there in 1991.... a few years ago. Was typical back then to get the run a round. I actually went to UH and received better tx. Just because they are CCF, doesn't mean you will get treated better. I know they recently opened a sacr specialty clinic but have heard good and bad. Always take a shot, you never know till you get there. I am in FL now.

davidk

Based on my extensive research, I am convinced that most Sarcodosis patients have been exposed to toxic mold, either where they live, where they work, or where they go to school. Please, for your own sake research: ( MOLD EXPOSURE AND SARCODOSIS). Research the symtoms of mold exposure and the human body. In my opinion, most doctors either aren't aware of this research, or due to politics and the drug industry refuse to address this issue with Sarcodosis Sufferes! In my opinion Mold Exposure and the maladies it causes will be the most important enviromental health issue of the Twenty First Century!

Nicki117

Yes i have, the Docs and staff at their smaller hospitals are not familar with Sarc, they tend to blow off the disease. I HAVE found a Pulm Doctor that works very well with me and consults with Dr. Culver at the main campus down town. She is wonderful. As for the rest of the Docs and staff at the smaller hospitals that are affiliated with Cleveland clinc.... well.... not so good. They need to be made aware of this disease. Perhaps they need more education.

HopeNicole

Thanks that was very helpful! I am goin to specify that I want to see Dr. Culver. Is he in pulmonology?

mybobbiedoll

I was diagnose in feb of 08 and three months after I scheduled an apt with the cleveland clinic the moment I met the doc I was content he cared and was going to be there to help me threw this I see Dr Parambil he works with Dr culver's in the pulmonary Desk A90. Right now the sarc is attacking my lymph nodes, lungs, joints, and just recently moved into nero sarc as well I actually have an apt with him on the 13th so hopefully things go well I have a feeling were gonna have to increase my meds. Good luck to you!!! And choosing the CC I feel is a very wise decision just remember they have a lot of patients and u sometimes need to take it upon urself to make apt. And call them!

HopeNicole

Thanks everyone I actually spoke w Carla yesterday from the CC my doctor has spoken w her and I have to get my medical records to her Monday. I was hopin for an appt before christmas but I am afraid its prob gonna be right after. I am still hurtin everyday and have started to suffer from chest pain also!

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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.

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