Acute Disseminated Encephalomyelitis (ADEM) Support Group

Any luck finding an ADEM doctor?


#1

Hi everyone,

We currently live in a state with virtually NO ONE that knows anything about ADEM (I'm surprised it got diagnosed at all!) and now we're moving to another area with no one specializing in ADEM.

It seems the folks I've contacted are really only interested if it is acute (happening right now) rather than recovery. (And again, if it is happening right now, how would I be able to call or email?!?)

Sorry, just really frustrated. For Social Security (which seems to think I'm JUST FINE and can go to work full-time, no problem!), I have to continue seeing someone, but I've no idea even what to ask anymore. I'm 2 1/2 years out of the initial attack. No further setbacks except for when I push to do too much.

Thoughts? We've moving to the Kansas City area but are willing to drive to Colorado or Cincinnati if anyone has suggestions there.

Thanks,

LauraK


#2

Have you checked with the Cleveland Clinic? I know last year they did have a couple of doctors that dealt with ADEM according the the website.

Lynn


#3

I live in Houston, Texas. I originally went to several neurologists that didn’t know anything about it. From what I have learned and been told by my doctor is that there are no ADEM specialists. Most cases of ADEM get sent to MS (Multiple Sclerosis) doctors. My Doctor is the Director of the Maxine Messenger MS Clinic in the Medical Center in Houston. It is affiliated with Baylor College of Medicine. I saw Dr. Benjamin Greenberg who is with UT Southwestern MS Clinic in Dallas, Texas and he was really good.

I would suggest finding an MS Clinic somewhere around where you will be, or a doctor that specializes in MS. ADEM is considered a borderline MS diagnosis. ADEM is a diagnosis that qualifies you under the National MS Society. They have listed my diagnosis as MS for certain qualifications so insurance understands my condition. ADEM is so rare that many doctors, therapists, and others don’t know anything about it. I’ve had to explain it several times to many people.

I hope you find someone to help you!

PS. I am 2 1/2 years out of my original diagnosis. I am 40 yrs old and had to retire from teaching on disability. I still have to use a walker to walk so I’m not fully recovered yet.

Lori


#4

Hi Lynn,

I meant Cleveland not Cincinnati. Sheesh! C'mon Brain!

Lynn said:

Have you checked with the Cleveland Clinic? I know last year they did have a couple of doctors that dealt with ADEM according the the website.

Lynn


#5

Hi Lori,

Wow, you and I have a lot in common! I was a teacher, and that is just not possible. You've heard of the absent-minded professor? Well, COMPLETELY FORGETFUL would be more accurate! I only need a walker or cane first thing in the morning or evening. I exhaust so easily and recovery can take days. I'm prone to incredibly severe headaches (clusters) now and food can bring that on. Just so frustrating.

Thanks for your response.

Aggie97 said:

I live in Houston, Texas. I originally went to several neurologists that didn't know anything about it. From what I have learned and been told by my doctor is that there are no ADEM specialists. Most cases of ADEM get sent to MS (Multiple Sclerosis) doctors. My Doctor is the Director of the Maxine Messenger MS Clinic in the Medical Center in Houston. It is affiliated with Baylor College of Medicine. I saw Dr. Benjamin Greenberg who is with UT Southwestern MS Clinic in Dallas, Texas and he was really good.

I would suggest finding an MS Clinic somewhere around where you will be, or a doctor that specializes in MS. ADEM is considered a borderline MS diagnosis. ADEM is a diagnosis that qualifies you under the National MS Society. They have listed my diagnosis as MS for certain qualifications so insurance understands my condition. ADEM is so rare that many doctors, therapists, and others don't know anything about it. I've had to explain it several times to many people.

I hope you find someone to help you!


PS. I am 2 1/2 years out of my original diagnosis. I am 40 yrs old and had to retire from teaching on disability. I still have to use a walker to walk so I'm not fully recovered yet.

Lori

#6

i completely understand. There is no way I could go back. I don’t have the headaches anymore so I am thankful for that! I’m sorry you do.

Good luck!


#7

I have heard from our neurologist in Toledo, OH that Cleveland Clinic has a great doc there.


#8

Is there a link to the Dr. in Cleveland? That's where I am, and though my doctors are great, it seems that no one really knows about ADEM or a 'fix' to be able to just live life again.


#9

http://my.clevelandclinic.org/services/neurological_institute/mellen-center-multiple-sclerosis/diseases-conditions/hic-acute-disseminated-encephalomyelitis Hopefully this will help. There are phone numbers you can call on the page.