Day 18, Cushing’s Awareness Challenge 2016

I have seen this image several places online and it never ceases to crack me up. Sometimes, we really have strange things going on inside our bodies.

Usually, unlike Kermit, we ourselves know that something isn’t quite right, even before the doctors know. Keep in touch with your own body so you’ll know, even before the MRI.

I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

Finally, someone did.

These days, there’s no excuse to keep you from learning all you can about what’s going on with you. There’s your computer and the internet. Keep reading and learning all you can. You have a vested interest in what’s going on inside, not your doctor.

 

Day 10, Cushing’s Awareness Challenge 2016

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

7a4e4-maryoonerose

California Doctors – So far

california

 

The doctors listed here have been recommended to Cushing’s Help by other patients as being helpful to them.  These physicians are familiar with the symptoms and treatment of Cushing’s Disease (pituitary) and Cushing’s Syndrome. Your primary care physician may be able to order very basic screening tests. Some of these doctors may require a referral and/or an abnormal test result prior to scheduling an appointment.

Cushing’s Help does not endorse any particular physician. Choosing a particular physician and substantiating his/her expertise is the responsibility of the individual patient.

To recommend your own doctor for this list, please fill out this form.

This list is a continuing resource as new doctors are added, edited OR removed.  

These doctors are also available on this map.  Please add yourself and/or your doctor

California

Beverly Hills

Cohan, Pejman 

Specialty: Neuroendocrine 

Location: 150 N Robertson Blvd # 210
Beverly Hills, CA

Phone: 310-657-3030

Patient Comment: He’s been my Endo for 15 years. Only sees neuroendocrine patients


Freemont

Kunwar, Sandeep

Specialty: Neurosurgeon

Hospital: Washington Hospital

Location: Freemont, CA

Hospital: UCSF

Location: San Francisco, CA

Website: http://www.ucsfhealth.org/sandeep.kunwar

Patient Comments: And dr kunwar at ucsf was my very skilled surgeon. I didn’t have to see his endo preop

I also had my surgery done with Dr. Kunwar at Washington Hospital in Fremont (East Bay). He does a few days a week in Fremont and the rest in SF. This is my third recurrence and I would definitely recommend him


Srinivasan, Lakshmi

Specialty: Endocrinologist

Hospital: Palo Alto Medical Foundation

Location: Freemont, CA

Patient Comments: My endo is Dr. Lakshmi Srinivasan at Palo Alto Medical Foundation in Fremont. She is fantastic–takes a lot of time during every appt and is very attentive and responsive to email and calls.


Los Angeles

Friedman, Theodore

Specialty: Cushing’s, Growth Hormone Deficient, Hypopituitary, adrenal, thyroid, fatigue

Address: 1125 S. Beverly Drive. Suite 730

Location: Los Angeles, CA

Hospital: Charles Drew

Website: http://goodhormonehealth.com

Patient Comments:  I am a Dr Friedman patient, he is wonderful.


 Orange

Linskey, Mark 

Specialty: Neurosurgeon 

Hospital: UCI

Location: Orange, CA

Website: http://www.ucirvinehealth.org/find-a-doctor/l/mark-linskey/

Patient Comment: The pit surgery was done by both Linskey and Bhendarkar and I am doing well post op, they are very diligent in their care. If I have to have another surgery for Cushing’s I will definitely use this team again.


Bhandarkar, Naveem

Specialty: ENT

Hospital: UCI

Location: Orange/Irving, CA

Website: http://www.ent.uci.edu/faculty/naveen-d-bhandarkar-md

Patient Comment: The pit surgery was done by both Linskey and Bhendarkar and I am doing well post op, they are very diligent in their care. If I have to have another surgery for Cushing’s I will definitely use this team again.


San Francisco

Kunwar, Sandeep

Specialty: Neurosurgeon

Hospital: Washington Hospital

Location: Freemont, CA

Hospital: UCSF

Location: San Francisco, CA

Website: http://www.ucsfhealth.org/sandeep.kunwar

Patient Comments: And dr kunwar at ucsf was my very skilled surgeon. I didn’t have to see his endo preop

I also had my surgery done with Dr. Kunwar at Washington Hospital in Fremont (East Bay). He does a few days a week in Fremont and the rest in SF. This is my third recurrence and I would definitely recommend him


More coming soon!

Day Eighteen, Cushing’s Awareness Challenge 2015

 

I have seen this image several places online and it never ceases to crack me up. Sometimes, we really have strange things going on inside our bodies.

Usually, unlike Kermit, we ourselves know that something isn’t quite right, even before the doctors know. Keep in touch with your own body so you’ll know, even before the MRI.

I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

Finally, someone did.

These days, there’s no excuse to keep you from learning all you can about what’s going on with you. There’s your computer and the internet. Keep reading and learning all you can. You have a vested interest in what’s going on inside, not your doctor.

Day Sixteen, Cushing’s Awareness Challenge 2015

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.  Make a calendar showing which days you had what symptoms.  Google calendars are great for this.

This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

 

7a4e4-maryoonerose

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