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Adult-onset leukoencephalopathy or leukodystrophy

crblock
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I am a 65-year-old woman, living in Chicago, who has recently been diagnosed with leukoencephalopathy, of unknown origin. In January, 2008, I had the symptoms of a stroke, but stroke was ruled out. MS was suspected, based on an MRI of my brain, but MS has also been ruled out.
I have been in a lot of pain, and have some balance issues. In January, 2009, I will be going to the Pain Management Program at the Rehabilitation Institute of Chicago.
Is there anyone else who has an adult-onset UND? Would you like to share your trials or triumphs?

Explore topics in this discussion:

Pain Memory Incontinence Stroke Leukodystrophy

13 replies

Mick

My wife has adld unknown origin, and her father had it. Most folks get diagnosed in mid 40's. Her father was diagnosed at about 76. there is a very small group but if you would like to discuss further email me at mpeek@iquest.net

leeroy

Could you please tell me how you were diagnosed? I have an undiagnosed condition which is slowly progressive - a lot of pain and many symptoms similar to ADLD which started when I was 44. I have been to many doctors who have told me many different things but no treatment has helped.

crblock

Hello Leeroy,
I was diagnosed by the comparison of MRI's from 1993 and 2008. I never really had pain until this latest episode. I did have numbness, but not pain. However, since the January, 2008 episode, I have had severe, constant pain in the lower right quadrant of my body. The Rehabilitation Institute of Chicago's Pain Management Program was beneficial, but very difficult and demanding.
-- Carolyn

MOORPARK

Hello Caroyn,
What is the difference between ADLD leukocyphylenthapy and ADLD leukodystrophy. I have been told that I have ADLD leukodystrophy I am trying to be in touch with similar patients.
Manny.

crblock

Hello Manny,
I believe that they are different words for the same thing.
Carolyn

Ginger09

I too Have some form of leukodystrophy tho they don't know what yet, I have decided since it went from 2 spots to largely throughout my brain in a little less than 3 years to start requesting certain tests to rule out or find out what I have. Thursday I will ask to be tested for CADISIL. I will be surprised if it is negative since all the symptoms and time lines seem to coincide with this disease. I have had the migraines with and without aura since my mid 20's. Then developed fibro in mid 30's, As of 2005 I began to fall frequently,wake up with a headache that would last all day..but it was only on the right side of my head. I then started with incontinence, memory loss, and losing time. Not remembering where I had been..what I said, and had even watched movies I could not remember watching! So far I still have no answers..but am determined to get to the bottom of all this. I have been waiting for over 3 yrs for disability and have been a burden on my kids and mom. So I am glad to have found this wonderful site to be able to talk to people who are as desperate for answers as I am.
God Bless

MOORPARK

Hello Carolyn,
What stage of the disease are you at. What are the symptoms. Can you walk. Do you go for any therapies and for periodic check ups.Is anything helping.
Manny

ROBSKID

I have a lot of symptoms that you do but I have been told that i am a carrier that is affected with AMN. My brother died with AMN, my son died with ALD and I have two grandsons on the oil. I have decided that my mon also died with the same as me. I have not had feeling in my lower body for about 8 years I also can't feel my feet. Recently I have pain in my toes and it is thought that I am in the process of drop foot, but that is not official. I work with Hopkins and think they are the best. I hope this will help you.

samshdls

Hi Carolyn,
I hope this email finds you well. My husband is 52 and was diagnosed with HDLS which is a herediatry Diffuse Leukoencephalopathy with Spheroids. He has progressed to the stage of being bedfast. He also experiences great pain in his left shoulder and left hip and down his leg. Rigidity is a huge concern for him, and muscle loss. To this point we have managed his pain with over the counter meds and some prescription meds. His pain has advanced so that those meds no longer are effective. I am very curious as to what you are doing for pain. Would you mind sharing that information with me?
Thank you for your post, it is very timely.
Lisa

warriorsgirl

My husband was diagnosed with Cadasil in Feb 2009. His memory is awful. The migraines are the worst for him. He sometimes has severe muscle cramping in strange areas.

DesisMom

My daughter has been having tests since May and she is now being diagnosed with leukoencephalopothy at the age of 15. She has been tested for every kind of leukodystrophy and everything has come back negative. At this point, we are just treating symptoms and hopefully slowing down or stopping the progression of this disease. She had a five day round of IVIG and a five day round of high dose Steroids. She is now getting steroids through an i.v. once a week at home. We are getting ready for her to start high school whether the school is ready or not. She has her good days and bad days. We have also started PT, OT and ST. Hard to do all this and work but her medical bills are piling up and we make to much money for any assistance. I would like any information that anyone has about this and what has/has not worked for them. Thanks for listening !!

medavee

My condition was undiagnosed for awhile. It is called CADASIL. I have stroke like symptoms. There is a difference in the MRI between MS and CADASIL. My current Neurologist was surprised at how many of his coleagues know nothing about this disease. It may not be it but its worth checking out.

MOORPARK

Hello Carolyn,
Have not seen your post for a while.
Just wondering how is your health.
Are you still trying the rehab program. How is it helping your health
Manny

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