Johns Hopkins MS Center

[LaurieB]

Hi everyone!

I'm hoping to find out if anyone has been to the Johns Hopkins MS center and whether it was helpful for you or not.
I'll be visiting my sister soon and my neurologist is so good about 'the more information we have, the better'

Thanks so much in advance if you can share any info with me!
Many well wishes for all...

[Jules A]

I think going to a MS specialist even if only for a second opinion is never a bad idea. I go because I want to stay in touch with the people I figure will know first if a homerun is in the pipeline.

However what I have found is if you are looking for them to have any extraordinary answers, predictions or special treatments you will likely be disappointed. Imo they are incredibly smart and compassionate physicians but MS has very few answers or solutions to what ails us.

[LaurieB]

Thanks

I think going to a MS specialist even if only for a second opinion is never a bad idea. I go because I want to stay in touch with the people I figure will know first if a homerun is in the pipeline.

However what I have found is if you are looking for them to have any extraordinary answers, predictions or special treatments you will likely be disappointed. Imo they are incredibly smart and compassionate physicians but MS has very few answers or solutions to what ails us.

thank you, Jules A, for your input. I have been thinking along the same lines. Somehow, the validation from a center that specializes in any given disease might, at least, validate my feelings about my diagnosis.

Even if their opinion is that everything that I'm doing to deal with this is best, I think I'd find some peace with that.

[walkerhe09]

I have been there three times and am scheduled to go back in January. I have always had a good experience. Let me know if you would like more specifics.

[Mamabug]

I don't go to John's Hopkins MS Center, but to an MS Specialist at KU Med Center since 2008. For 5 years, prior to that, I went to a general neurologist.

I would agree, that seeing an MS Specialist is always a good idea. Even if it's not at a location that would allow you to make regular or frequent visits there, "the more information we have the better" is good advice.

For me, although I loved my previous neuro, my MS Specialist is just so much more knowledgeable about MS that it is worth driving 3 hours to the appointment, once every 6 months, instead of 30 minutes. She found a more effective DMD for me, she has knowledge about research out there, she answers questions well, etc. Sometimes, I felt like I knew more about many aspects of MS than my previous neuro did.

[jreagan70]

Hi LaurieB:

One thing that hasn't been said outright yet is that the Hopkins neurology department has an international reputation for excellence, and Hopkins is a leader in MS research.

So there's a difference between going to Hopkins for a second opinion because it's just conveniently the medical center near where your sister lives and you'd be just as happy going to any medical center for a second opinion, and going to Hopkins to take advantage of the advantageous coincidence that an internationally renowned neurology clinic is close to where you'll be visiting.

Are you asking about Hopkins because it just happens to be the clinic that's where you'll be, or are you asking because you appreciate Hopkins' excellent reputation and you're anxious to take advantage of their particular expertise while you're in the area?

[Jules A]

Hi LaurieB:

One thing that hasn't been said outright yet is that the Hopkins neurology department has an international reputation for excellence, and Hopkins is a leader in MS research.

So there's a difference between going to Hopkins for a second opinion because it's just conveniently the medical center near where your sister lives and you'd be just as happy going to any medical center for a second opinion, and going to Hopkins to take advantage of the advantageous coincidence that an internationally renowned neurology clinic is close to where you'll be visiting.

Are you asking about Hopkins because it just happens to be the clinic that's where you'll be, or are you asking because you appreciate Hopkins' excellent reputation and you're anxious to take advantage of their particular expertise while you're in the area?

It seems you are rather enamored by Hopkins and while I concur it is an excellent center with an excellent reputation, they haven't exactly come up with anything especially earth shattering for me. Is there something you are getting there that the rest of us need to know about?

[jreagan70]

Is there something you are getting there that the rest of us need to know about?

The question isn't about me. The question is about what the OP's frame of reference and expectations about Hopkins are.

It's the difference between:

"I'm going to visit my sister, and while I'm there I want to buy a new car. There's a Kia dealership right down the street. Should I buy a Kia?"

and

"I'm going to visit my sister, and while I'm there I want to buy a new car. There's a Ferrari dealership right down the street. Should I buy a Ferrari?"

To disregard the difference between Hopkins and some local hospital neurologist is to disregard the difference between a Kia and a Ferrari. Is the location of the dealership more important than the buyer's desires and expectations of the car? It's a critical question that also applies to medicine.

[Jules A]

The question isn't about me. The question is about what the OP's frame of reference and expectations about Hopkins are.

It's the difference between:

"I'm going to visit my sister, and while I'm there I want to buy a new car. There's a Kia dealership right down the street. Should I buy a Kia?"

and

"I'm going to visit my sister, and while I'm there I want to buy a new car. There's a Ferrari dealership right down the street. Should I buy a Ferrari?"

To disregard the difference between Hopkins and some local hospital neurologist is to disregard the difference between a Kia and a Ferrari. Is the location of the dealership more important than the buyer's desires and expectations of the car? It's a critical question that also applies to medicine.

You totally lost me but thanks for taking the time to reply.

[LaurieB]

Their Reputation

Hi LaurieB:

One thing that hasn't been said outright yet is that the Hopkins neurology department has an international reputation for excellence, and Hopkins is a leader in MS research.

So there's a difference between going to Hopkins for a second opinion because it's just conveniently the medical center near where your sister lives and you'd be just as happy going to any medical center for a second opinion, and going to Hopkins to take advantage of the advantageous coincidence that an internationally renowned neurology clinic is close to where you'll be visiting.

Are you asking about Hopkins because it just happens to be the clinic that's where you'll be, or are you asking because you appreciate Hopkins' excellent reputation and you're anxious to take advantage of their particular expertise while you're in the area?

Firstly, I'm so sorry...everyone, for the delay in thanking you all for your input. I am thinking of going because of their reputation. Plus, my own neurologist is great...he's always open to more input, he doesn't discount other specialists and feels like the more information he has, the better he can help me. Because Hopkins neuro dept. is on the 'Ferrari' list of MS centers, maybe there will be even ONE thing more that can help me.

I know they aren't going to cure me. I know I may just get more of the same advice and part of me might walk away from there in tears.
But maybe I will learn a new twist about treatment or therapies. Maybe I will gain some knowledge that will help someone here...
Maybe I just need to hear it from a specialty center to get past the denial I still struggle with.

I'm sorry we all have this stupid disease, but I'm ever so grateful to be able to talk with all of you here. Only those of us with it 'get it'.

I hope your weekend's were very kind to you!

[KatieAgain]

Of course you go.

Johns Hopkins, The Cleveland Clinic, The Rock Mountain Center and UCSF have trials going, they have some of the best doctors and researchers. These places have better resources. You might actually find out something...and its great your current neuro is on board.

I myself am trying to get admitted to the Cleveland Clinic for an MS Complication. It will be worth my plane ticket to go and talk to the experts. It will at least give m the sense that I have done all I can.

[J-Bo]

Hiya, Laurie--I think you're smart to take advantage of a world-class medical center. I made the decision to go to Cleveland Clinic after I came to the conclusion that I wasn't happy with my MS care closer to home. It's a 2-1/2 hour drive for me, but well worth it. Of course they don't have any miracles, but they are much more attentive, and seem so much more well-informed and up-to-date than my MS specialist who was 10 minutes away. I sure hope it turns out as well for you!