recently diagnosed - checking on ALS clinics for second opinion

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ralsip

Member
Joined
Jan 24, 2014
Messages
16
Reason
PALS
Diagnosis
01/2014
Country
US
State
Kentucky
City
Louisville
Hi, my name is Rick. I was diagnosed yesterday with ALS by a neurologist in Louisville. He said nothing is 100% and I need to get a second opinion at an ALS specialty clinic. He researched around and recommended the one at Emory University. I was also considering the Mayo Clinic. Was wondering if anyone here had any experiences with either or other suggestions. Thanks in advance.

On a more personal note. I couldn't sleep for a long time last night and came across this forum. Just reading the many threads and posts by many of the brave and compassionate folks on this website gave me some comfort and peace and for that I thank you. I just turned 42 and am happily married with two boys 12 and 7. Still trying to process what this means for us.
 
Hi Rick, welcome.
You'll find many amazing people you can relate to here.
I too am 42, married with kids.
Ask what you need, share what you can.
Many of us have been right where you are now, so I remember the hell you're feeling.
Cheers,
Casey
 
We will help you any way we can. If you are going to travel for a second opinion, I would consider Massachusetts General, Duke, or Emory.
 
I don't have a recommendation on where to go, just check if the clinic is multidisciplinary. Ours has everyone see us in one visit, neurologist, respiratory therapist, occupational therapist, speech therapist, physical therapist, social worker and maybe one or 2 others… They all get together and discuss the case, and collaborate with each other. Ours here in Grand Rapids MI has been a very positive experience.
My husband had just turned 42 when he was diagnosed in 2000. I understand what your family is going through, but of course, I could never imagine what you are going through. Good luck with the clinic, I hope that the original diagnosis is wrong.
Mary
 
Thanks so much for the information and support.
 
There are a number of great clinics to help you and guide you. As a practical matter, you might want to consider how easy it is to travel there as, as time goes by, traveling itself will present challenges. Just a suggestion.
 
Welcome Rick. I am so sorry about your diagnosis and so well remember that very first month, let alone the process it was to get to being told what we did not want to hear.

You have found the best place to get support and constructive advice, there are so many great people here and such a collective lot of experience.
 
Here is the most complete list I know of ALS clinics. As you can see, there is one in Lexington and in neighboring states. I don't see the point in spending $ to go far afield to confirm a diagnosed unless the neuro was very uncertain or findings conflict. Why not go to the one you might want to be seen at in the future, to see if it meets your needs?
 
Thanks again for the help and suggestions.
 
ralsip - sorry to see you here. We are similar in that I am 43, was diagnosed 1 year ago and have 2 kids ages 7 and 4. As others stated, I would find a clinic local. I live in Virginia and attend GWU ALS clinic. Saying that, I am participating in a clinical trial at the Mayo Clinic in MN and do have to say, very compassionate, prompt and attentive, like it a lot!
 
Hi, Rick --

>I need to get a second opinion at an ALS specialty clinic. He researched around and recommended the one at Emory University. I was also considering the Mayo Clinic. Was wondering if anyone here had any experiences with either or other suggestions. Thanks in advance.

We use Dr. Appel's clinic in Houston. People come from all over the country (and countries) to it, as it organizes a quarterly group clinic where we meet with all the related physicians and therapists (and each other) during one day.


>On a more personal note. I couldn't sleep for a long time last night and came across this forum. Just reading the many threads and posts by many of the brave and compassionate folks on this website gave me some comfort and peace and for that I thank you. I just turned 42 and am happily married with two boys 12 and 7. Still trying to process what this means for us.

I am in my 5th month since diagnosis and still have problems getting thru the night :-( ... most folks say the initial anxiety passes in a month or two.

Kind regards,

Max
 
Thanks Max. Been a little better sleeping last couple of nights. Getting used to twitches at night. They go 24/7 but don't bother me as much during day. Hard at night time.
 
Rick,

Welcome. At the beginning of my wild ALS ride, when twitches were bothering me at night - I'd count them... Like sheep! Helped me get to sleep. In fact, my hubby cuddled up and counted them too.

A good rest sure goes a long way in helping us cope with the new day's box of chocolates!
 
Hi Rick
I would choose Emory they have done extensive work on ALS and I am sure they would be very helpful for you. Mayo is OK but from my research Emory is better.

Rick
 
Thanks to everyone. Went to Emory and saw Dr. Glass. He and his team were very good. Unfortunately they confirmed my original diagnosis. Hoping for a slow progression.
 
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