What happens at the end stages of metachromatic leukodystrophy?

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I am a new caregiver, and was curious what to expect at the end stage of this disease.
The symptoms of metachromatic leukodystrophy vary, depending on the age they develop and in degree of severity.

Because metachromatic leukodystrophy is relatively rare, and the symptoms mimic other diseases, patients with MLD may be misdiagnosed. Children may be diagnosed with cerebral palsy, deterioration in learning skills or behavioral disturbances. For people with late juvenile or adult MLD, early symptoms may mimic mental illness or psychiatric disorders.

There are four forms of MLD. The forms and their symptoms are:

Late Infantile
This is the most common form of metachromatic leukodystrophy. Symptoms appear at age 4 or younger and may include:

Loss of motor development milestones, such as losing the ability to walk or stand up
Problems walking (gait disturbances)
Behavioral changes, such as increased irritability or decreased attention span
Slurred speech and problems talking (speech disturbances)
Difficulty with feeding and swallowing
Loss of memory
Loss of vision
Seizures may be present
The loss of brain and body functions progresses fairly rapidly, with death usually occurring within five to 10 years from the time symptoms appear.

Early Juvenile
Symptoms appear between the ages of 4 to 6 and may include:

Problems walking (gait disturbances)
Loss of previously achieved physical and mental skills, such as developing incontinence (the child may not be able to control urination or bowel movements)
Behavioral changes, such as a decline in school performance
Decline in intellectual, or thinking, abilities
Muscle tremors, spasms or loss of muscle tone
Decreased attention span
Seizures may be present
Although this form of MLD progresses more slowly than the infantile form, death usually occurs within 10 to 20 years of symptoms appearing.

Late Juvenile and Adult
The initial symptoms of these forms of MLD are change in personality and behavior, leading to frequent misdiagnosis of psychiatric disorders. Symptoms appear in the late teens or older and may include:

Change in personality or behavior, such as a decline in performance at school or on the job
Behavior that is increasingly impulsive or uninhibited
Behavioral problems that may be diagnosed as mental illness, or psychiatric disorders
Problems walking (gait disturbances) and stiffness in the legs
Numbness, tingling and pain in the hands and feet
Progressive decline in intellectual (thinking) abilities
As the disease progresses, patients will lose the ability to perform daily living activities and need to be monitored continually, including feeding. Patients with these late-onset forms of MLD can have very slow progressive decline, lasting for decades. However, their life span is shortened due to the disease.  (+ info)

how much is duration life for patients who has leukodystrophy?

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my little brother 18 years old, has leukodystrophy.i am very sad for him. sad for his die.... please help me.thanks a lot.
It varies from patient to patient on how long they live. Many live for a long period of time .

The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.

Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational, and speech therapies; and nutritional, educational, and recreational programs. Bone marrow transplantation is showing promise for a few of the leukodystrophies.

I've enclosed a website link that will give you a great deal of information and help.  (+ info)

Can people with leukodystrophy suffer from hair loss?

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Medical professionals to answer this question only please
and how bad can it become if it can?
The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.  (+ info)

Anyone out there familiar with leukodystrophy?

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I am a pediatric physical therapist and just had a client diagnosed with this. I have not worked with this diagnosis before and am trying to gather info for the family. Thanks.
Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include metachromatic leukodystrophy, Krabbé disease, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Childhood Ataxia with Central Hypomyelination or CACH (also known as Vanishing White Matter Disease), Alexander disease, Refsum disease, and cerebrotendinous xanthomatosis. The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.

Is there any treatment?


Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational, and speech therapies; and nutritional, educational, and recreational programs. Bone marrow transplantation is showing promise for a few of the leukodystrophies.

What is the prognosis?


The prognosis for the leukodystrophies varies according to the specific type of leukodystrophy.

What research is being done?


The NINDS supports research on genetic disorders, including the leukodystrophies. The goals of this research are to increase scientific understanding of these disorders, and to find ways to prevent, treat, and, ultimately, cure them.  (+ info)

Can anyone tell me does the complaint Leukodystrophy cause extreme tiredness?

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Medical opinions only please
anything that causes dystrophy normally does i have muscle dystrophy and i get extremely tired i aso have pernicious anaemia that doesn't cause me any fatigue but the muscle dystophy does anything that causes your body to weaken or detierierate will cause this your doctor should give you something to help you with this your medication could also be causing the fatigue hope this was useful take care i totally sympathise with you and know how frustrating it is being tired all the time good luck and take care cat x  (+ info)

Has Anyone Heard of the disease called Leukodystrophy?

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If anyone has heard of this... could you give me what information you know? I have googled it and the information at best is limited. Is this always a progressive disease? Will it definitely become worse over time or is there a chance it won't? Whatever you can tell me is appreciated. Thank you.
What is the prognosis for people with this disease? Is it always a horrible outcome? Is it possible to NOT have it progress further or does it always???
  (+ info)

Could someone please tell me does LEUKODYSTROPHY make you feel so tired that you feel half doped?

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Does the disease Leukodystrophy make you so tired you could just fall asleep anywhere
Metachromatic leukodystrophy (MLD) is a severely debilitating, progressive disease. The outlook is poor. Individuals with this disorder are expected to die prematurely. The earlier the age of diagnosis, the more rapid the progression.
Consult a neurologist.
Support Groups:
For additional information and resources, see:
* United Leukodystrophy Association - http://www.ulf.org/
* MLD Foundation - http://www.mldfoundation.org/  (+ info)

I am always so tired could someone advise me if this is caused by my disability I have Leukodystrophy?

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Hi,

My husband used to feel tired and weak all the time when he was diagnosed Anemic. Re-check with your doctor regarding your Red blood cells count and other important minerals/vitamin levels are OK.

Sorry, I am not aware of "Leukodystrophy". But i have searched for it. The below website did not mention anything about tiredness.  (+ info)

homeopaths, is there any cure for genetic disease called leukodystrophy?

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my son is diagnosed with leukodystrophy. his symptoms include:
1. seizures
2. constipation
3. blindness
4. spots on white matter as seen in mri report

please help, i have already lost one of my son. i can not afford to lose my second one.

please suggest some medicines as well.
please help my dying son, i m so desperate
The problem you are facing is that this disease is typically a genetic issue. Lorenzo's Oil has been somewhat effective in treating some of the forms of this disease and it appears it is a fatty acid issue. The foremost expert in fatty acids in the country is Mary G. Enig, Ph.D. I suggest you contact that Weston A. Price foundation and speak to Sally Fallon and see if you can make contact with Ms. Enig to discuss this with her. I will also e-mail you some additional information.

good luck  (+ info)

anyone encounter leukodystrophy in a child?

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she's a one year old girl and 2 months ago she was diagnosed with leukodystrophy, is there a possible treatment? What will be her chance to live a normal life? please help!!!
this is a new type of treatment and there are no known results that can prove right or wrong.

http://www.co-hematology.com/pt/re/cohematology/abstract.00062752-199911000-00004.htm;jsessionid=LmRbM9QY11VQLyz2WCXMrSbr1fZG1T3tRt2LC53SG9y56CvntxHb!202652997!181195629!8091!-1

on the other hand I'd go and try to re-diagnose the case
and see other alternatives, it is hard to know the specifications of this girls health state from the statement made here, but since you are dealing with something that may have lifelong repercussions you want to make sure that what the first diagnose came up with is true 1000% then i'd look to some alternative complementary treatmets.
here are some places:

http://www.liebertonline.com/doi/abs/10.1089/acm.1999.5.575

one remedy i know for the improvement of the nervous system when the development has been impared.
a mixture of olive oil and tincture of myrrhae heated in a table spoon over a small flame. the mixture cannot be stored and has to be prepared every time. when it cools down it must be rubbed in the back's skin along the muscles near the spine. the best time to do this is after the evening's bath. done this every evening over along period of time like 3 month to 6 month can make a huge difference in the expected development of the infant, physicaly and mentaly. its worth trying since there are no negative effects or contraindications.
GOOD LUCK and BLESSES  (+ info)

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