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martyt

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Hi,

This is my first post on this forum so I apologize in advance if I am breaking protocol. My wife received her diagnosed last week of ALS. Now we need to start the second opinion process. We leave near Boston. I'm wondering if any of you have had any experience with the ALS clinics at Mass General, Lahey Clinic or Beth Israel Deaconess? Those three programs are the ALSA-certified clinics in our area. Our neurologist is pushing Mass General, but because his communication skills are perhaps typical of others in his speciality, we don't know if that's the best choice for us or not.

Any info or ideas would be most helpful.

Thanks,

Marty
 
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Forum Staff

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I was able to find the following information, you may wish to contact the people by email where an email address is available.

Please post back here if you find out something when you contact these organisations/individuals. Other people in Boston may find it helpful.

Lahey MDA/ALS Clinic (Burlington, MA)
Contact: Bethany Rigney
Email: [email protected]
General Phone: 781-273-8632

Boston Medical Center ALS Clinic (Boston)
Contact: Janice Wiesman, Medical Director
Email: [email protected]
General Number: 617-638-8456

Springfield - Baystate ALS Patients Clinic (Springfield, MA)
Contact: Sandy Goddin
Email: [email protected]
General Number: 413-794-7282

In time, someone from Boston might be able to post their experiences with the Clinics in Boston.

If you have already done so, I'd get in contact with your local Massachusetts ALS chapter, here's their homepage: http://www.als-ma.org/
 

martyt

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Thanks very much for this, the email addresses especially. I received a quick email response from the ALSA locally, and will be speaking with the person who wrote to me today.

If no one has any particular experience with any of these clinics, that's fine. I'll start contacting all of them - then *I'll* be the expert!

- Marty
 

Al

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Hi Marty. I've been on a few different forums in the last couple of years and have hear only good about Mass General.
 

martyt

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Great, thanks Al. The nice thing about Boston is that there don't seem to be really bad choices, at least so far. In additon to Mass general, we're also looking into Lahey, partly because it's closer, and partly because they have a strong family and whole-person approach.

Also the ALSA folks locally have been simply magnificent. In the midst of bad news, kindness and attention to follow-though goes a really long way.

Marty
 
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