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Iggy

New member
Joined
Jan 14, 2011
Messages
2
Reason
Loved one DX
Diagnosis
01/2011
Country
MEX
State
NL
City
M
Hi everybody! First of all, just by reading some of the threads in this forum, let me tell you guys that you are a great and admirable bunch. (English is not my first language, so sorry for my spelling and in case I say something that could be misunderstood)

As you can see, I'm new to the forum. A family member has just been diagnose with ALS, but he wants to get a second opinion, and his doctor agrees, and he said that if he could go to the US to a specialized clinic, much the better.

Well, he can go, so he needs to decide where to go. As he is flying into the US anyway, geographic location is not that important. The Doctor mentioned the Mayo Clinic in Minnesota, a clinic in Harvard (Boston) and the Cleveland clinic as some of the options. I saw references to Dr. Bedlack of Duke in this forum.

So, my starting post in the forum is to ask you guys about recommendations of a clinic for a reliable diagnose, and a multi-specialty approach to the illness. He also wants to learn as much as possible in that visit about the disease, what he should be doing, how he should be prepare, what reasearch is being done, etc. In short, a professional, humane and complete approach to the problem.

He is doing his research on his own, but I want to help anyway I can, so your comments will be appreciated.

Thank you.
 
Dr. Polston with the Cleveland Clinic would be my first choice. I spent a year trying to get a diagnosis. The ALS doctor in Pittsburgh missed it and that caused me further months of delay, questions and more tests. I was very impressed with Dr. Polston @ the Cleveland Clinic. Good luck what ever avenue you choose.
 
We have been going to UCSF in San Francisco for the last two years. We have very happy with their service. It is a multi-disciplinary clinic which specializes in als. If you have a handicap plaque, you can park your car in front of the hospital for valet parking at no charge. When you are finished with your appointment they bring the car to you. Our appointment is on Friday afternoons at 1:00. We usually see the respiratory therapist, physical therapist, speech therapist, nurse, mda rep, social worker and doctor. They are usually very prompt and you get to see everyone in one place which is great. Anything you need in taken care of right away. Dr. Lomen answers emails promptly and has been quick to respond to our needs. We are very grateful that we have found this clinic because it has made our life so much better and has given David a good quality of life longer. Bev
 
I'm afraid my answer will be in the minority. There are a lot of great clinics and doctors in the US. I've been to UCLA and UCI clinics and they are both good. Rather, I suggest you decide based on a travel/vacation destination. As ALS progresses it will become harder and harder for your PALS to travel, and in the long run with ALS fulfilling a bucket list item is much more important than the actual diagnosis itself.

Make sure to bring ALL your medical records with you. A very important part of the diagnosis is to witness the progression of the disease. No doctor can witness progression with a single visit, so you have to provide evidence.

As far as getting your questions answered, I've found this forum to be the best resource. So stick around here and ask your questions. At the specialist's office, you will have at best an hour or two to have your questions answered, under stress and with language barriers. Make sure to write a detailed list of questions before hand, and take a personal voice recorder to use for taking notes.

Tom
 
I also recommend UCSF very highly. Dr. Lomen-Hoerth did Glen's second opinion appointment and was also able to pick up on and diagnose his FTD. Having that second diagnosis made it much easier for us to know what we were dealing with and how best to make Glen's quality of life the best possible. And... you get a nice trip to San Francisco!
 
I was diagnosed at Mayo Clinic in Rochester, MN and am very happy with the team of physicians there. (However, there are more scenic places, if you want to combine a holiday trip with your visit to the States.) Good luck.
 
I am very happy with the Dr's and Staff at Emory University in Atlanta. That being said I think the places that you mentioned and others have mentioned would all suit your needs. tmasters gave you very sound advice when they suggested planning it based on a vacation and where you would like to visit.
 
I agree with tmasters. Base your destination on a fun place to travel, not te clinic. Any decent doctor at a dedicated ALS facility will be able to give you the diagnosis.
 
I go to the Forbes Norris ALS center at Cal Pacific Med Center in San Francisco.
They do diagnosed as well as research and have a team approach to care. I highly recommend them .
blessiing, Pat
 
I go to Dr. Laura Nist, ALS Neurologist at Loma Linda University in Southern Calif. She is excellent and does not rush you through like you are cattle.

My second opinion was done at UCLA, Dr. Michael Graves who was very good.
 
Thak you for all your coments. I understand what tmasters say about the location and can see the wisdom in his words. The thing is that we want to do everything we can to make a good choice (or at least have the feeling that we are doing so), and I think that coments from patients can give invaluable input that can't be found in the webpage of a clinic. Thats why I really appreciate all the coments given here about clinics and dotors, and will be very happy to find more information in here.

Thank you all again.
 
Iggy, the neighborhood is anything but pretty, but Johns Hopkins in Baltimore, Maryland is also a good place for diagnosis. They ask for all information first to be sent to them, and then they then appoint a doctor for you according to what the information directs. I cannot give you a doctor's name, in other words.
 
Okay, I know I don't get two votes but there's a point I neglected to make the first time around.

If you had stage 4 cancer or an unidentifiable blood disease it would be VERY important to go to the best medical facility you can find to save your life. But you know you have ALS and the doctor can't do anything to help you, just confirm your condition. There is no treatment.

Your family member should enjoy life while he/she can.

I'm just remembering back to my "official" diagnosis when I thought it was so important at the time. In reality it's what you do with the time you have left.

(BTW: I'm usually not this opinionated. :) )

Good luck to you and your family,
-Tom
 
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