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Johny

Member
Joined
Feb 2, 2015
Messages
20
Reason
CALS
Diagnosis
12/2014
Country
US
State
Ohio
City
Wauseon
I would like to know if anyone has been treated at U of M in Ann Arbor, Mich. I have had a hard time deciding where to take my wife who has been diagnosed with ALS in December, I was looking at Cleveland Clinic also.

U of M is Hour and a half away and Cleveland Cleveland Clinic is 2 1/2 hours away.

If anyone has or are being treated at ether of these Clinics I would like to hear there feed back.
Who the doctors are and how you was treat by them.

Like all of your loved ones you want the best treatment for them.

This is a very devastating disease.
What are your feeling going with a doctor that has only 7 years experiences with dealing with ALS Patient?

Yes there are allot of questions, but for now if I only could have these answered I would be very thankful.
 
Welcome and sorry you have to be here. No experience with those clinics.
Regarding experience if someone is a neuromuscular specialist with 7 years as an attending ( meaning after their fellowship) I think that is plenty of experience. If they are a general neurologist no matter how many years in practice I would keep looking.
 
Welcome and sorry you have to be here. No experience with those clinics.
Regarding experience if someone is a neuromuscular specialist with 7 years as an attending ( meaning after their fellowship) I think that is plenty of experience. If they are a general neurologist no matter how many years in practice I would keep looking.

With that being said what does a neurologis specialis do that a neurologist specialist cannot do?

The doctor that U of M set up to see my wife is a neurologis specialist not a neuromuscular specialist. Why would they meaning the ALS Clinic at U of M set up an appointment to see a neurologis specialist and not a neuromuscular specialist? Since they specialize in ALS?

An you cannot go in and tell them who you want to see, they appoint a doctor to you.
An they rank U of M one of the top Hospitals in the Nation.
I find it hard to believe that is all they have is neurologist treating ALS and being ranked one of the top Hospitals in the Nation.

My kids thought that it would be best to go to the closed ALS Clinic instead of going to Cleveland Clinic which is 2 1/2 to 3 hours away, compared to 1 1/2 hours away.
 
You will find that as the disease progresses, the closer the better! Any trip becomes draining, and leaves the PALS wiped out.
 
I looked at the U of M site. They do not list their physicians as neuromuscular specialists true but their credentials indicate they are indeed neuromuscular specialists if you are seeing someone in their ALS clinic. All neuromuscular specialists are neurologists but not vice versa i had not remembered that Dr Feldman was there now. She is famous for her work in stem cells. There is value to being a little closer if the clinics are both good. You can change if you are not happy
 
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I was told that there is NO such ALS Doctors, if there is NO ALS doctors why are they specialist than for ALS?

That came from another hospital.
 
I have no idea what they meant. All the doctors who specialize in ALS ( and related diseases like PLS and usually MMN) have trained as neurologists and finished a residency in neurology where they would have cared for people with the various neurological disorders. All the ones I have met then did a fellowship where their focus was neuromuscular disorders or perhaps electrophysiology. It is possible to be board certified in neuromuscular medicine specifically though I think this is a newer certification as the older specialists do not have this. What you want is someone who cares for neuromuscular patients as their clinical job. I have seen listings where someone says they care for ALS... And headaches, strokes, seizures, ms, parkinsons etc etc. You don't want that person who is not going to be as in tune to ALS as someone who sees ALS patients all the time
 
Johnny, I'm sorry to hear of your wife's diagnosis. I'm newly diagnosed and there is so much to take in and process... feelings and information. Please feel comfortable following Nikki's advice. She is a wealth of information.

Nikki, I learn something new from each of your postings...thanks for being there for us and being willing to take the time to respond. I appreciate you!
 
I just went to my first clinic in Dec at U of M. I saw Dr Feldman. She is a wonderful

compassionate Dr. I also saw a bunch of other people that day. I'm still real new so i haven't

figured out how that whole thing works yet there. I do know I was there for about 5 hours and

it was exhausting. My next clinic is March. It seemed weird for it to be so far away but I guess

that's how they do it.

I'm sorry for what your family's going though. We are still getting adjusted ourselves.
 
Man, I looked at the UofM ALS team and am very impressed. We have 2 top notch clinics out here in Phoenix and UofM is every bit as good, if not better.

I agree that closer is better. I would also suggest going to a local support group. You can get good input from the people there. In our area the groups are mostly put on by the ALSA, but I go to an MDA sponsored clinic. BOTH are excellent. Many of the people in our group are envious of the empathy and caring I get from my Dr. I can not imagine going thru this without a Dr who is empathetic, compassionate as well as knowledgeable. My Dr is the dept head and has called me at home to check on me. I am not the only one he has done that with either. I would not want one who is mostly a clinician with no bedside manner.

Sorry to have you here but this is a terrific forum and Tillie, and others, have excellent advice and compassion.

Doug
 
I just went to my first clinic in Dec at U of M. I saw Dr Feldman. She is a wonderful

compassionate Dr. I also saw a bunch of other people that day. I'm still real new so i haven't

figured out how that whole thing works yet there. I do know I was there for about 5 hours and

it was exhausting. My next clinic is March. It seemed weird for it to be so far away but I guess

that's how they do it.

I'm sorry for what your family's going though. We are still getting adjusted ourselves.


I am very happy that you have been at U of M and I do have some questions to ask you since you are new there: The first time that you went what day of the week was you there?
We are going there on February 23 which is a Monday, I was told yesterday that they only meet with the ALS team on Wednesday's, When they call last Monday they told me that it would be between 4 to 6 hours, yesterday the SW told me that we would not meet the ALS team on the 23rd. An I told him they told us that it would take 4 to 6 hours. I am now confessed. He told me he would check on it.

Did you have a EMG test done there the first visit? My wife will be having that done on the 23rd. Her doctor is Dr. Brain Callaghan , they tell me that he is very good.

Could you tell me a little about your first visit?
 
I am very happy that you have been at U of M and I do have some questions to ask you since you are new there: The first time that you went what day of the week was you there?
We are going there on February 23 which is a Monday, I was told yesterday that they only meet with the ALS team on Wednesday's, When they call last Monday they told me that it would be between 4 to 6 hours, yesterday the SW told me that we would not meet the ALS team on the 23rd. An I told him they told us that it would take 4 to 6 hours. I am now confessed. He told me he would check on it.

Did you have a EMG test done there the first visit? My wife will be having that done on the 23rd. Her doctor is Dr. Brain Callaghan , they tell me that he is very good.

Could you tell me a little about your first visit?

Hello. My first appointment was on a Monday. I was supposed to have EMG then but we had a bad ice storm the night before and I was stuck on 23 for an hour and half so I was really late. I called to tell them ill just reschedule and they said come anyway we might have to move EMG to next visit.
The visit was mind boggling. Had to tell my life story for last 5 years, they went through normal examination, they introduced other team members we will be working with, they asked more questions then asked me if I had any questions. I wasn't very well prepared for asking questions so make sure you write them down.
Also if you need papers for disability you can ask for it then.
I was very comfortable there and felt like they are straightforward. I don't have regrets about choosing there.
 
>Who the doctors are and how you was treat by them.

Eva Feldman is one of the top ALS docs in the world -- look her up and follow the ips stem cell work she is doing.



Max - Friday, February 06, 2015 4:29:07 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
UofM '78
 
Re: U of M Clinic compare to Cleveland ALS Clinic

I would like to know if you will need Magic Bullet NutriBullet or anything like this to get nutrition or to be able to get a meal.

Also what would be the best thing to be prepared for at U of M on the first visit?
I have told my wife to write everything that has taken place in the past five years.
What should I be doing to help her?
When do you caregiver start getting help to re-leave them of some of the tension?

Believe me I love my wife and want to help her as much as possible if not all the time.
 
A lot of pals and cals take anti depressants or anxiety meds to help with the difficulty of dealing with the stress of the disease.

We do not have a nutri bullet. We use an oster blender for smoothies. Different things work for different people though. Clinic in general, is a very busy, overwhelming experiencing. I would make sure you have a snack for both of you and something to drink.
 
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