Best Neurology Center in the US?

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COlisa

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Per Al's suggestion (Thanks Al :) ), I'm posting this to the General forum to see if there is input from anyone there.

Hi All,
Looking for someplace to get a 3rd objective opinion for my husband who has been diagnosed with PBP/possible ALS.

In you opinion, where is the "best" neurology center in the US?

My definition of "best":
-Thorough, comprehensive testing (does not rely on results or opinions from other doctors)
-Compassionate
-Deals with facts, not maybes

Thanks,
Lisa
 

GWB

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COlisa said:
Per Al's suggestion (Thanks Al :) ), I'm posting this to the General forum to see if there is input from anyone there.

Hi All,
Looking for someplace to get a 3rd objective opinion for my husband who has been diagnosed with PBP/possible ALS.

In you opinion, where is the "best" neurology center in the US?

My definition of "best":
-Thorough, comprehensive testing (does not rely on results or opinions from other doctors)
-Compassionate
-Deals with facts, not maybes

Thanks,
Lisa
Hi Lisa,

I cannot tell you if these are the "best" neurology centers in US, but according to the person who I came in contact at ALS.net, these are some of places she referred me to. Feel free to contact Mary Beth Geise RN (who gave me this list) and talk with her if you wish. I'm sure others here will have suggestions for you as well.


MDA/ALS CENTER AT THE UNIVERSITY OF KANSAS MEDICAL CENTER
(913) 859-0632
(913) 588-6965 Fax
E-mail: [email protected] I know this physician. He is a wonderful, compassionate
Arthur Dick, M.D., Director
39th and Rainbow Blvd.
Kansas City, KS 66103

MDA/ALS CENTER AT THE UNIVERSITY OF TEXAS
(214) 648-2871
(214) 648-7992 FAX
E-mail: [email protected]
Jeffrey L. Elliott, M.D., Director Have not meet this MD, but know his clinic is well attended
Southwest Medical Center at Dallas
5323 Harry Hines Boulevard
Dallas, TX 75235-8897

MDA/ALS Center at Methodist Hospital Neurological Institute
(713) 441-3760
E-mail: [email protected] <mailto:[email protected]> I have known Dr. Appel since 1983, world renown. May be difficult to get in,
Stanley H. Appel, M.D., Director
The Methodist Hospital Neurological Institute6560 Fannin Street, # 802
Houston, TX 77030

MDA/ALS CENTER AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO
(210) 567-1945 Dr Jackson is well liked and very friendly. She has clinic trials in place.
(210) 567-1948 FAX
E-mail: [email protected]
Carlayne E. Jackson, M.D., Director
University of Texas Health Science Center
HealthSouth Rehabilitation Institute of San Antonio
9119 Cinnamon Hill
San Antonio, TX 78240

Mary Beth Geise, RN
Patient Resource Specialist
[email protected]
617-441-7250
 

CBowman

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I heard the Mayo Clinic was the best.
 

COlisa

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Mayo not an option if we want insurance to pick up any of it.

Anybody been out west? UCLA? Stanford?
 

JACKIEMAX

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Best Neurology Clinic

Hi Everyone...

My Husband Is Being Treated, And Was 'finally' Diagnosed At The Vanderbilt Hospital Als Clinic In Nashville , Tn.

We Are Extremely Pleased With Them. His Doctor Has Actually Telephoned Him 'personally' ---- Yes, I Said Personally. She Actually Picked Up A Phone And Called A Patient In The Middle Of The Day, And Talked Extensively, Answering Questions At Length.

Just A Suggestion.

Her Name Is Dr. Peltier.

Jackiemax
 

COlisa

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AlmasDaddy said:
I think the best clinic would be one that came up with something other than ALS :)
LOL! My point EXACTLY!


Thanks all for the input. Any more suggestions out there?
 

COlisa

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JACKIEMAX said:
Hi Everyone...

My Husband Is Being Treated, And Was 'finally' Diagnosed At The Vanderbilt Hospital Als Clinic In Nashville , Tn.

We Are Extremely Pleased With Them. His Doctor Has Actually Telephoned Him 'personally' ---- Yes, I Said Personally. She Actually Picked Up A Phone And Called A Patient In The Middle Of The Day, And Talked Extensively, Answering Questions At Length.

Just A Suggestion.

Her Name Is Dr. Peltier.

Jackiemax
Wow, thanks for the info Jackiemax.
 

vantec

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Meg1 said:
On the east coast I think the best bets would be Mass General and Johns Hopkins.

But, most importantly, no matter how good a hospital's reputation is, if it doesn't have an ALSA-recognized ALS center, you're wasting your time. Check out your choices here:

http://www.alsa.org/community/centers.cfm?CFID=21421&CFTOKEN=42263
Hi Meg,

Even an ALSA-recognized ALS center can be a waste of time. I went to the Cleveland Clinic Foundation Department of Neurology, in Cleveland, Ohio, and the doctor wouldn't even do an EMG. All he did was take a blood sample for my CK levels (not a very reliable marker for an early onset ALS patient), and told me I could not have ALS.

Do you have to be in a wheelchair before these Neurologist will give you a diagnosed? Has anyone gone to the Cleveland Clinic and was diagnosed with ALS? If so, what tests did the doctor do, to give you a final diagnosed?

Conrad
 

Meg1

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vantec said:
Hi Meg,

Even an ALSA-recognized ALS center can be a waste of time. I went to the Cleveland Clinic Foundation Department of Neurology, in Cleveland, Ohio, and the doctor wouldn't even do an EMG. All he did was take a blood sample for my CK levels (not a very reliable marker for an early onset ALS patient), and told me I could not have ALS.

Do you have to be in a wheelchair before these Neurologist will give you a diagnosed? Has anyone gone to the Cleveland Clinic and was diagnosed with ALS? If so, what tests did the doctor do, to give you a final diagnosed?

Conrad
Sounds to me like you've gotten excellent information from the Cleveland Clinic ALS Center. The medical opinion from the doctors there is that you do not have ALS. They are the experts (and, if I read your old posts correctly, they agree with the other five neurologists you've seen). Why don't you believe them?
 

ltr

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Dr.s don't listen

I can understand Conrad's disillusion. It is very difficult to be suffering from these symptoms that a lot of us have and wait to see a doctor who you have complete faith in. We want to hear that doctor say we don't have an MND, but we want him to do it with an "I understand your symptoms and they are horrible" attitude. We want them to do everything that we have researched and know they should do in order to rule out devastating disease. I have found that they are condescending, love to blame problems on stress and anxiety and frankly could care less. When this happens, a person tends to not believe what they are saying and think that they don't understand.

Personally I was incredibly happy to get to my appt. at Upstate Medical, to finally have a good doctor examine and LISTEN to me. It was a freak show. This guy jumped around the room, grabbed his roll on his stomach and said, "I didn't use to have this, but now I do and have to live with it. I don't obsess over it." Oh My God. He has no idea what my life is like, laying on a couch too weak to get up with excruciating muscle cramps and twitching like a bag of microwave popcorn, but all he could say was demeaning words. Then he said, "being single, in college with three kids certainly can cause a lot of anxiety." Yea, it can. So can weakness, muscle twitching and excruciating cramps, jaw pain and weakness, etc. You guys get the picture. After all the demeaning and making me feel like I'm neurotic and not worth his time, he scheduled an EMG and sleep study, some bloodwork. So, I will take that and be happy with it. He could have left all the garbage out and just done that.

So, my point is, it's not always about them saying you don't have it. We have to be able to believe we don't have it, we have to know so we can plan and get help. I don't care if Conrad saw 25 doctors who said he didn't have ALS----they may not have done it the right way. Can my friends here understand where I am coming from?

One more thing. If these doctors read this forum, maybe then they wouldn't say things like, "I have never heard of that symptom" or "that doesn't happen in ALS" or "I don't see any muscle twitching. If it was als or mnd I would see muscle twitching".

Leslie
 

Meg1

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I think you are expecting a little too much from a specialized medical center if you're asking the people there to not only give you their expert opinion on whether or not you have the disease in question but also to feel your pain. If an ALS center can rule out ALS, you need to move on. If, the ALS doc is wrong, which is unlikely, the disease will eventually show itself and there's nothing you can do to treat it anyway, so there's no downside to NOT being diagnosed. If you're really getting these opinions in order to get a "no ALS" opinion, then you've gotten what you came for. The last thing I want a doctor to do is run up a bill (and increase insurance costs) by ordering a bunch of expensive tests that he knows are not necessary.

If, OTOH, Upstate Medical is not an ALS center, then you need to be evaluated at a place where you can get a diagnosis in which you can be confident. Then, you need to believe that diagnosis. (Although I'm unclear why you have focused on ALS since it seems that every medical professional you have seen has told you you don't have it.)
 

ltr

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Meg,

I am not sure if you are talking to me? What medical professionals have I seen other than a PCP and a neurology nurse practioner? I haven't seen anyone related to als until yesterday and he was a jerk. I came to this forum for some listening ears and frankly, say I am emotional today if you want, you seem to be demeaning to some of us.

Furthermore, it ABSOLUTELY DOES matter to have the diagnosis. I don't have money to deal with the illness, I will need help. HELP ONLY COMES WITH DIAGNOSIS. So that, I would consider, is a downside. And, he didn't say I didn't have als, he said, "common things are common, rare things are rare" and he proceeded to schedule the EMG.

I am glad for you, that you can be so laissez-faire about the diagnosis. I am not sure if you feel physically bad, but I have very caring feelings for everyone on his forum who is ill and if they are focused on als, such as I, they feel ill. So, Meg, I do believe his diagnosis. Oh wait.....he didn't give me one.

I just really can't believe your post! Leslie
 

vantec

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Meg,

I didn't see five neurologists. I saw three doctors, and two neurologists. How can you say that the Cleveland Clinic could possibly have given me excellent information, if they didn't even do a EMG? Like ltr said, it does make a difference if they give me a diagnosis. I am so weak I can barely walk, the pain from cramps is terrible, I can't sleep more than 4 hours, and when I wake up, I'm twitching all over. They have medications that can help all these problems, and without a diagnosis, how can I get those medications?

I'm not a doctor, and God I hope I don't have ALS, but when you have every symptom, and the Cleveland Clinic neurologists won't give you an EMG test, how can they know you don't have ALS, MS, Myasthenia Gravis, Wilson's Disease, etc.? I know my body, and I have some kind of MND, or autoimmune disease. I would bet my life on.

Conrad
 
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