Any experience with Johns Hopkins?

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LynnC

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Hello,

My sister-in-law was recently diagnosed with ALS and is seeking a second opinion. The neurologist had an intern do the exam, was brutal in delivering the diagnosis, and gave no treatment plan whatsoever, not even mentioning research. Wondering if this is "typical" in the industry?!

I'm thinking that Johns Hopkins may be a great choice for a second opinion. Has anyone gone there recently (i.e. within the past year) and, if so, can you tell me a bit about your experience, e.g. how long your appointment was, if a neurologist (or intern) did your exam, if you were given a treatment plan, etc.

I'd really like them to find a good place this second time around and, ideally, a doctor who's not only highly competent, but who also has a "human side."

Thanks so much for your consideration.
 
Hi,

Check for a "Visitor Message", I left on your Profile page.


NH
 
Thank you both so much. That's surprising (and disappointing) to hear about Hopkins. They definitely sound like they're on the forefront of ALS research, so I was anticipating to hear that they were more proactive (than most places).

Guess we just have to take this one step at a time, and focus on getting a definitive diagnosis for now. And continue to pray for a miracle.

Thank you again.
 
Why don't you try the University of Maryland Medical Center?
It's in Baltimore, near Catonsville where you apparently live (from your profile) and they have a competent staff of Neurologists, among them, Dr. Justin Yuan-Ping Kwan, who is very competent on the field of Neuromuscular disorders.
Also Teri Clayton, a representative from the ALS Association (MD, D.C., and Virginia Chapter) works closely with them.

Just an opinion.


NH
 
Thank you for sharing that. I will tell my family about the University of Maryland also. I'm here in MD, but they live out of state. If the ALS is confirmed, they may go to a clinic closer to them for treatment.

Always wise to explore options! Great idea to check in with the ALS Association also. Thank you again for your kind assistance. Blessings on your day!
 
What area are they in? Maybe someone here can recommend a good clinic in their area
Good luck
Nikki
 
They live in Western PA. Looks like the University of Pittsburgh and Allegheny General Hospital both have ALS Clinics? If anyone has gone there for treatment, I'd be very interested to hear about your experience. Thanks so much!
 
Of those 2 it is Pitt hands down. Allegheny does not even have one physician who specializes in ALS or movement disorders. Their neurologist are all listed as special interest in ALS and migraines and strokes and etc etc
 
We took my mother to the Hopkins ALS clinic, and actually had a very good experience with the neurologist and the exam (and the confirmation of ALS that was already guessed by my mother's dementia doctor at Hopkins), but our experience with the Hopkins ALS clinic was terrible. Won't be going back to the ALS clinic, ever.
 
Sorry, should have said "experience with the *rest of the* Hopkins ALS clinic was terrible."
 
Thanks so much for telling me this. I will relay it to my family. Sounds like JH is a great choice for ruling ALS in or out, but not so great on the treatment side. Fortunately, there are other clinics out there.

Thanks again. My sister-in-law and her family have been through so much already. I'm just trying to do all I can to "protect" them going forward.

Thank God for this forum!
 
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