View Full Version : Best Medical facility or team of doctors needed immediately (All of USA is acceptable

04-20-2012, 09:35 PM
My Mom is 69. She was diagnosed with Lupus in 1976 at 33. At that time she was told that she had 5 years to live and the doctor's wanted her to be bed ridden. That's not my Mom. and she said "Nope, I'm going to enjoy my life."

With in the last year or two things have really gotten out of control. She had been on plaquenil for 25 years until recently because one of the side effects is the eye retina detaching. This came on all of a sudden.

So she can't take the new lupus med either.

Allergies: Valium, Morpine, sufas, darvon, darvacet, nubain, iodine, codine, demeral, tetracyclines, prpoxyphen-n100, lodine or etodolac, temazepam (it is the Bdnxodyxocain in it). Other medications causing vomiting: ocycodone/acetaminophen, percoset or tylox.


Neuropathy, all lower teeth just now diagnosed as absessed and infected, leaky aortic valve in heart, gastrointestinal...can't eat or has dry heaves and water bowels, lung fibromyalgiam, throat- nielson procedure (still having trouble swallowing and has node-one hard that is of concern and some that are soft, hemorraghed colitis- still a problem, upper colon not functioning to the point that inspection could not be processed, optical migraines, liver or pancreas problem-not sure yet. Others that may or may not have been taken care of, swelling of legs and ankles.

Meds - will post tomorrow - numerous!!!!

Need the best Lupus Doctor or Hospital that can work with Nerve Doctor's, Heart Doctors, Dentists, Eye Doctors, Gastrointestinal Doctors, Liver or pancreas doctors, throat doctor, and colon doctors.

The goal is to have meds reviewed, and a group of the best doctors mentioned above to work together and communicate with one another concerning her condition.

She is at the point of losing her will to live. She is in constant pain in one format or another, getting new bad news, and she would like to see just some improvement in her health.

Can someone please tell me where I can get such a customer oriented doctor or hospital that can effectively create a team to work with her.

Anywhere in the USA is an answer.

Thanks to all !!

04-20-2012, 10:58 PM
Sorry about your moms health but here is a number to group of rheumatologist in Florida (305-652-6676). Ask for Dr. Maldonado or Dr. Oberstein. Wish both of you the best and your mom a speedy recovery. Your mom is tough, thats one trait we all have that are living with Lupus.

wishing you the best


04-21-2012, 10:20 AM
Thank you for your quick information !!! AND THE PERSONAL FEELINGS ARE MUCH APPRECIATED !!

04-21-2012, 08:09 PM
hi tipperd and welcome.

i am from australia....
so i cannot help with information.

i did want to offer an ear and a shoulder.
we understand how hard it can be to see your mom suffering in this way.

04-21-2012, 08:20 PM
Hi Tipperd,
The best rheumy that I know is Dr. Emily Pineda in San Antonio, Texas.
I was also impressed with the medical facilities in Houston, Tx, but the doc that I saw there was a mobility expert.
I live in California now, and there are some great facilities in San Francisco - both Stanford Medical and UCSF.
Many people recommend Johns Hopkins. I know that they have a Sjogren's/Lupus expert there who is both a rheumatologist and a neurologist.
If I lived in the Northeast, I would try to see that doc.
I think that a teaching hospital would be your best bet.
I hope this helps - good luck!

04-25-2012, 12:25 PM
Have you thought about the Cleveland Clinic in Cleveland, OH? They rank among the top in the country.

05-01-2012, 06:31 PM
Sorry I haven't been able to thank everyone. I have a "triple whammy" going on. First this post about my mom, then getting my Dad on some anti-depression and anti-anxiety medication and scheduling an appointment for a psychologist. (That was a major feat !!! He is one that says "Suck it up or tough blankety blank blank). I also spent 5 days in the hospital with my wife. Her meds reacted on her and it was very serious. I am out of those woods for now.

I have heard of Cleveland and will mention that. Thank you SeaMonkey!

Also, I really appreciate your recommendations Emperor of the World. I will sit with Mom and Dad and review all of them. I have a brother that lives in California, so these were also helpful. I also appreciate your hug....Mom will tell me on the phone "Consider yourself hugged" so this was a perfect way of wording the ending.

Supermoderator...I really appreciate your concern and wanting to help. I understand that living in Australia you would have a hard time making recommendations. (I really want to come to Australia some day. It is at the top of my list for countries I would like to see)

To those of you that just cared.....well I guess you all know because we are all on the same forum....I REALLY APPRECIATE IT.

I still haven't received the latest meds Mom is on. They have changed frequently in the past few weeks. The last three days have been pretty good comparatively speaking.

When I get them I will post them and thanks for all your insight and caring !!!

One other question for all people on this board. Is there a forum for family members that talk to other family members about what they are going through. This might help my Dad out.

With Much Thanks and Much Appreciation.


05-01-2012, 08:26 PM
When it rains, it pours for you when it comes to family medical problems. I'm glad that it seems to be settling down for you somewhat.

I know what it is like to be willing to go anywhere to save a loved one. When my mother-in-law had clots in her lungs, the docs in Fla. said that it was inoperable and gave her six months to live. My hubby researched and found a hospital in San Diego that was doing cutting-edge surgery for this.
He flew from Texas, where we were living, to Florida, got Mom onto a plane and took her to San Diego. He stayed at a military facility there for a few weeks until she had her surgery and was well enough to travel. The surgery worked, and she lived for another three years after that.
I hope that one of our suggestions helps you.

As for your question, you are posting on the "friends and family" forum of WHL. That would be the place to send your Dad to post. We all tend to post a lot in the "Laurie's Lounge" forum. It's a good place to ask questions about anything, not just Lupus.
Good luck to you and your family.