Looking for ALS clinic recommendations NJ/NY area

[Janeta]

Hello Everyone! After over a year, my Mom is finally diagnosed with ALS. I know I don't have to say here how we feel... But if anyone of you could recommend a clinic/center I would really appreciate. This is the major decision at this point. The neurologist is recommending Columbia Univ. in the city but I also find out that there is one in N. Brunswick... those of you who live in NJ or NY PLEASE, PLEASE let me know about your experience. Thank you in advance.

 

[Kathy K]

I go to the Hospital for Special Surgery . I can't recommend them highly enough. The entire staff is dedicated, caring, helpful. They are quick to get you any services you may need. Traffic in that area is bad but there is parking attached to the hospital and valet parking is available. Let me know if you have any questions and I will try to help.

Kathy

 

[Kathy K]

One more thing, contact the ALS Association. They have lots of resources

 

[Janeta]

Thank you for your reply Kathy. It really means a lot to me. I just want to make sure that when you said you go to the hospital for special surgery, you meant Columbia University Hospital? Because I see that there are few centers in Manhattan...

 

[Kathy K]

No, it's separate from Columbia. If you call the ALS Association of Greater New York they may be able to direct you to the closest clinic to you. I know there are several including Beth Israel and there's also 1 in New Jersey. For myself I have been very happy with Dr. Lange’s team at HSS. Let me know if you have any more questions. Best of luck.
Kathy

 

[Manhattanite]

Hi Janeta, we go to both the clinic at Beth Israel (Dr. McGowan) and Columbia (Dr. Mitsumoto / Dr. Andrews) -- luckily Medicare has covered visits at both clinics. This approach worked better for us because we were able to take the best that each clinic has to offer. Check if your insurance will pay for visits to various clinics initially so that you can find the one where you feel most comfortable.

 

[Janeta]

Thank you Kathy. Yesterday, I took my time in doing more research about ALS Centers. Honestly, I'm not convinced it cleared my mind, but finally learned the names of Centers in Manhattan... so sorry for asking not the smartest question, but it looks like my mind suddenly stopped working....

 

[Janeta]

Hi Manhattanite,
Thank you so, so much for your answer! Could you please, tell me more about Columbia? I live in North Jersey so distance wise I'm not far, and as I said my mom's neurologist is recommending DR. Mitsumoto. At first I felt relieved, but after I looked at the list of centers for Greater NY Chapter I noticed that Columbia does not have a certificate of excellence, so obviously, they are lacking something there... the question is what is it? Why do you also use Beth Israel? The MD of course mentioned all those centers but I was like paralyzed and could not ask any logical questions... Also do you use any functional/holistic medicine?

 

[Nikki J]

Janeta, some clinics are " certified" by ALSA but some clinics are associated with the MDA. I believe Columbia is one of those. Mine ( Mass General) is. I think the designations are more an indication of where their roots are and probably some politics. I don't think it is at all that Columbia tried for an ALSA approval and failed

 

[Manhattanite]

Hi Janeta, as Nikki mentioned, I believe Columbia is associated with the Muscle Dystrophy Association.

Honestly I think Columbia and Beth Israel are on a par - I haven't found them lacking in anything.

As I mentioned before, ultimately the clinic you go to might have to do more with personality, convenience, etc. At the core I think the clinics in the region offer the same standard of care. You might want to try Columbia in the City as well as your clinic in NJ and compare the two. Don't feel like you are bound to one clinic at this point!

We don't try functional/holistic medicine unless you consider medical marijuana holistic and still it doesn't seem to have any effect on my PALS...