Acute Disseminated Encephalomyelitis (ADEM) Support Group

In need of a ADEM specialist


#1

Hi all me again ā€¦ dose anyone know of a specialist anywhere in the world that specializes in adem ? My hubby is very crook and no one seems to h e answers


#2

Check out this page: http://myelitis.org/resources/physician-network/ - hopefully there is someone nearby. There is not for me, but I found a general neurologist who had experience with ADEM during her residency. Best of luck.

LauraK


#3

Cleveland Clinic, Cleveland, Oh. did have a couple of specialist.


#4

Hello. I hope that you can find what are you searching for .Iam looking for an answer for your question to my little boy so if you know any good one any where kindly let me know thank you and my best wishes to you and your family.

ENAS


#5

We were at Luciule Packard Children's Hospital in Palo Alto CA and we were very happy there. That said they only specialize in children so can't help your hubby, but might be useful for ENAS. Good luck finding your answers. Please share with us what you find out.


#6

When my 30-year old son got ADEM in April 2013, he was in the Army. Unfortunately, the Army doctors couldn't figure out what was wrong with him & he was getting worse by the minute. In an act of desperation, we contacted UT Southwest Med in the Dallas-Fort Worth (Texas) area to see if they could help. They were absolutely ready & willing to test & treat him. As we were preparing to have him flown there, the Army docs pulled all their resources together & determined it was ADEM (which none of them had ever seen before).

So, long story to say that we didn't use UT Southwest for his ADEM treatment, but they have an excellent reputation. I recommend them because they treated my 28-year old daughter-in-law when she had a massive stroke & we found them to be the best doctors around.

http://www.utswmedicine.org/conditions-specialties/neurosciences/


#7

Ken E&.Connie M thank you very much for your replay . i will try to contact these places thanks again.


#8

I found Dr Wingerchuck at the Mayo Clinic in Arizona. ADEM is his specialty--he is super hard to get a hold of tho.


#9

Did anyone see the doctor in Ohio or Texas? Who would u recommend for pediatric neuro?


#10

JP - We had a great experience with Kieth Van Haren at Lucille Packard Children's Hospital. If you're looking for a pediatric neurologist who specializes in white matter then maybe drop Kieth a line to see if he knows someone in Ohio or Texas. Good luck. Ken

JP said:

Did anyone see the doctor in Ohio or Texas? Who would u recommend for pediatric neuro?


#11

There are good resources at the Myelitis.org page: https://myelitis.org/physician-network/ Good luck.

LauraK


#12

I would highly recommend Dr. Benjamin Greenburg in Dallas, Texas. He is located at UT Southwestern. I went and saw him as a second opinion and really liked him. I live in Houston And I am currently with a Neurologist at the MS Clinic with Baylor College of Medicine in the Medical center in Houston. (Dr. George Hutton) I would recommend him as well. Dr. Greenburg looked over my case and I saw him as a consultation. I really liked him but decided to stay with my doctor in Houston since they had similar treatment plans.

I hope you find someone!


#13

Aggie97 - thank you for providing a specific name at UT SW. One day we hope to connect with him as my son is still having some moderate issues, but feels too busy with recently exiting Army & now in college classes to take time for himself. (By the way, my older son is an Aggie & married to one as well, class 2004.) Hope your treatment is going well. Blessings to all who are dealing with ADEM.


#14

Thank you! He is hard to get in to see and you have to get a recommendation from another doctor. He will study his case and give you a consultation of what he thinks you should do. I really liked him. I know of a really good Neurologist in College Station as well. He was my doctor at one time in Houston and was the first one to diagnose me. He was on Houston and is now in College Station if that is closer or better. Let me know if more info is needed. Glad he seems to be doing well. Iā€™m getting there.


#15

It seems that every Dr, Therapist or Professional I have located specializes in children or young adults with ADEM.


#16

Hi Have you found a specialist? Iā€™m also looking for a specialist doctor for my husband.


#17

Anybody you all recommend in TEXAS for my 10 yr old