Hopkins vs mayo

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Sammantha

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I need to know what everyone's opinion is on John's Hopkins and Mayo..... I am being referred to Hopkins but want to know if maybe Mayo is better? Thanks so much, Sam

I finally have my computer back!
 
Welcome back. Hopkins!
 
I have been to the Mayo Clinic in Rochester, MN 4 times in the last twelve months. In December, I was given a definite diagnosis of bulbar onset ALS. The Mayo Clinic would be my first choice for any ailment and diagnosis. Your tests results are available within hours and the staff is very competent and helpful. It is very easy to get around the Clinic buildings with subways and skyways which also connect you to most of the city. I decided to have a second opinion because everyone suggested it and the diagnosis was also ALS. Good Luck and I'm sure that John Hopkins is a wonderful facility also.
 
Has anyone gone to Duke and if so how was your experience?
 
Longroad,

Sammantha went to Duke....

I wanted to add the reason I "voted" for Hopkins was due not only to the consistently great way I'm treated there, but also because Dr. Jeffrey Rothstein is there, and his reputation is that he is the very best ALS doctors, especially in the field of research.

Obviously Mayo is great, I was given the choice by my referring doctor to go to either facility, and, another influence for my decision at the time, was reading on a couple of different message boards, how patients had come away from Mayo not feeling cared for, that even if the expertise was there, the human side wasn't. I'm sure this can happen anywhere given the right (or wrong) set of circumstances, but this stuck with me and did help guide my decision.

My own experience was that once I was in the Hopkins medical system, they have always treated me kindly, they're efficient, ... I can't say enough good about the administrative support staff, and their doctor's and other specialists are tops. There just hasn't been any negatives. The doctors come out to the waiting area to get you themselves, you're not shuffled off to an exam room only to find you're just being held there as the next step in the queue. My exam, especially the intital one, was very thorough, amazingly so.

I have not actually seen Dr Rothstein, I have not asked to, I'm happy with the primary care neurologist who I do see.

Robert (Planningguy) is goind to Mayo soon, and I'm sure he'll report back to us about his experience.
 
I'm going to Duke for my second opinoin. My primary Neurologist Dr. Susan Glenn is one of the best and a great person and a wonderful doctor. I had my choice of Duke or UNC and after working at UNC and seeing how they operate in some areas I wouldn't go there if I were dying.
 
I'm going to Duke for my second opinoin and I live in the area. My primary Neurologist Dr. Susan Glenn is one of the best and a great person and a wonderful doctor. I had my choice of Duke or UNC and after working at UNC and seeing how they operate in some areas I wouldn't go there if I were dying.

If I don't get the answers I need from Duke I'll go elsewhere. After 20 years of being in the medical field as a x-ray technologist and a patient I have learned and told my patients that if you know something is wrong with you and your doctor doesn't listen then get another opinion. My neurologist was one of the few doctors I ever heard say that doctors don't know everything about the human body. Not many doctors would ever admit that they don't know everything
 
It is true that doctor's are practicing medicine.. They are the best source we have, with forums like this maybe we can educate the doc's more about people with mnd. All we can tell you is do whatever you need to, if you need another opinion go and do that..
 
Rose you sold me! It will be awhile before i can go, like many others i am completely wiped out financially.. Thank God my husband has a steady job, he is very hard working, but all these co pays and doc bills and not bringing in the second paycheck has come to ahead.... I think it is good if the head doc does not see you BECAUSE, whenever the docs see me after they read my tests, they question everyone of them! The only doctors i have that come out and tell me the whole truth are woman doctors. This way the doctor can be totally subjective and take all the test results in. Although you do not want this to happen with disability docs, they will give you a clean bill of health if you were on your death bed, they would make you fight with a lawyer! They pay their own docs, who never see you to say well its not rheumatological its neurological and then there neurologist says, its not indefinetly neurological.. So you are in limboland as many of us are.... There i go ranting again, sorry! I love the picture of your dog, i have a peek a pom, he is small and furry white like a pomerianian but has the scrunched face of a pekignese, and i probably did not spell that right! ;)
 
.... I wanted to add the reason I "voted" for Hopkins was due not only to the consistently great way I'm treated there, but also because Dr. Jeffrey Rothstein is there, and his reputation is that he is the very best ALS doctors, especially in the field of research....
Hi Rose,

I have no experience with the diagnostic branches of the two institutions in question so I can't offer an opinion on that aspect. However, on the research end, it is precisely because of Jeffrey Rothstein that I have lost respect for the research capabilities of Hopkins and their ALS branch, the Robert Packard Center. In 2004 Rothstein announced that IGF-1 gene therapy produced outstanding results in mice and it would be tested on primates before humans. Friends, family and I contributed several thousand dollars to this research. Much later, when no results were announced I phoned Rothstein. He told me that the work had been contracted out to a lab that had bungled his directions hence the results were negative. However, since his results with mice were so promising, it would be repeated properly. Since then there has been not a whisper about this promising research. Why? More recently, when the very small and poorly documented lithium trial in Italy promised great things, Rothstein pronounced that the results were great because the lithium acted as a catalyst for rilutek and made the rilutek effective! This, despite not all the patients in Italy being on rilutek. Of course since then, a large lithium/rilutek study conducted by Patients Like Me demonstrated that the combo treatment was completely ineffective. No word from Rothstein though acknowledging this. Successive studies have demonstrated that rilutek is marginally effective if at all. Despite this, Rothstein to this day promotes it as a very successful therapy. Perhaps because he was involved with its development many years ago.

Needless to say I no longer contribute to the Packard Center.
 
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