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OHDaughter

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Hello. My father was diagnosed w/ALS earlier this month at West Virginia University (WVU). The diagnosis and recommendation to begin Radicava was so swift from WVU that I suggested he get a 2nd opinion. We had the 2nd opinion at the Cleveland Clinic last week, and they want to re-run the EMG and have done some additional blood work, but it seems that ALS will be the diagnosis. (This is still hard to accept as he is mostly asymptomatic. The EMGs done at the local neurologist and at WVU are, however, evidently compelling.)

Assuming the diagnosis is confirmed by the Cleveland Clinic, we are looking at ALS Clinics for ongoing care. My parents planned on returning to WVU (2 hr drive) but its lack of online presence/information, only having 15 total clinic ALS patients, and their swift diagnosis make me uneasy. We could utilize OhioHealth's ASL Clinic in Westerville, Ohio (also a 2 hr drive). My parents appreciated their Cleveland Clinic experience but it's a 3.5 hr drive and a stressful drive for them due to traffic/size. All 3 of these are on the ALSA.org website with differing classifications. I also just learned that Ohio State University also has an ASL clinic (also a 2 hr drive, it is NOT listed on the ALSA.org website).

Does anyone have any experience with any of these clinics? Do you have any questions you think I should ask the clinics to help guide the selection of a clinic? They will all be a considerable drive and I'd like to get established at a quality place sooner than later.

Thanks so much!
 

Nikki J

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I have no experience of any of the places you mention.

I went to the NEALS site ( this is a consortium of ALS specialists ). It is worth browsing the site and looking at archived webinars btw. I did a search for the zip of your reported location.
https://www.neals.org/for-people-with-als-caregivers/contact-an-als-specialist/

ETA I hoped my search results would show but they did not. However you can easily search for yourself I think

Things to look at are the credentials of the doctors- board certified in neuromuscular and or electrophysiology is good though some senior doctors have a neurology certification. Fellowship at a decent institution in neuromuscular or electrophysiology. Look at services - ot pt speech respiratory and see they are available through/ at the clinic.

ALSA certified centers are not your only option. Some centers are MDA certified ( mine - Mass general is). Others have neither but if they have good doctors and services I would give a try.

You don't have to stay at a clinic that does not work well and you could try a couple and decide. Closer is better all things being equal.

Another thing to look at is whether there are clinical trials he wants to do. It is easier at your own clinic but not mandatory
 

lgelb

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For other readers, I did a US/Canada clinic map and always welcome updates.

We have some West Virginians here; hopefully, they will chime in. You might also use the Search function up top.

Nikki pretty much summarized what I would say. To clarify, the various ALSA classifications do not add up to all the clinics, nor do the classifications signify anything ipso facto important to P/CALS. And you don't need a clinic to get thoughtful care.
 
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OHDaughter

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Many thanks for your advice lgelb and Nikki J!
 

Jrzygrl

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Laurie - Not in WV, but I do know of an update in my area.

MDA/ALS Center of Hope at Drexel University College of Medicine
219 N. Broad Street
Philadelphia PA 19107

is now

The Temple University MDA/ALS Center of Hope
3509 N Broad St
Philadelphia, PA 19140
(215)707-7261
 

lgelb

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Thanks, I'll update it!
 
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