Need your help on symtoms

I am writing for my sister who is beside herself in depression over what her body is doing to her.

About 2 years ago Robin started seeing a neuro because of a brain mri because of extensive white matter disease for her age, she is 54 yrs old.

Ofcourse at first they thought she had MS, but now has been diagnosed with leukodystrophy.

These are Robin's symtoms and we did not know if this is part of leukodystrophy or not.

Last 2 years;

1. Severe headaches that can last for up to 3 days.
Never had headaches in her life

2. Twitching all over her face and body all day long

3. Robins memory in the last two years is awful, she
can watch a movie one week and forget she
watched it.

4. This women was a financal wizard up to 2 years
ago and now gets very confused when working
with number or anything for that matter.

5. She gets what I call body jumps. These body jumps only happen when she is sleeping. Her body will start jerking all over. She had surgery 3 months ago, L4-5 fusion and so I have been sleeping in the same bed as her to help during the night. One night her body was jumping so bad she shook the whole bed and it woke me up. I did try and wake her and she put her head up and then right back down and continued jumping for a few more minutes.

She does not remember when her body does this, again it only happens in her sleep.

6. After her surgery 3 months ago, the first thing the doctor told us is that all the pain in her legs and feet would go away immediately. Some pain in her legs did go away, but she says she still has pain in her legs.

7. Cramping in the arches in her feet and toes, and burning in her feet, the burning is only when she lays down, and she says she feel like she is walking on marbles.

8. Her muscle tone has wasted away in the last 2 years which makes no sense to me because she had been very active all her life and had great muscle tone in her arms and legs.

9. Robin has had surgerys in the past and has healed faster then normal. She doesn't seem to be healing from this back surgery like she should. Her surgeron
said she would be almost good as new in 6 to 8 weeks, and its not happening.

Does the body heal slower for people that have Leukodystrophy.

Sorry for all the questions but we are new to this and need help. I am going to start going to her neuro doc with her because she forgets to tell him these symtoms.

Thank you for this website and your stories have made me cry. We just don't know what is in store for her and if any of these symtoms are part of this disease.

God Bless, Kris

By jolocny
Posted July 9, 2009 at 8:45 am
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Hi Kris,
From my own experience with ALD and talking with others, most of what you speak of sound like symptoms from it. Of course, if anything else is happening physically that points to one thing or another that should be checked out and ruled in/out. I was diagnosed after I had a surgery and my body was just not coming back the way I used to - I also used to heal very quickly after surgeries. Each symptom that you mention I have either experienced or know of a woman that does .... I hope they'll add to this thread.

I was also in a career that involved high stress and my symptoms grew exceedingly worse during the last few months that I worked. Also having been very physically active one day and then (seemingly) unable to continue that the next day was a beast to deal with!

Has she had menopause yet? I've noticed that it has made a difference for as I am going through that now. Especially the memory part - it's worse right now. A bunch of the symptoms may be exaggerated due to that! One of the most recent things that I've had is swelling in the feet and lower legs, on and off. My feet are either totally numb or very sensitive.

Fatigue has always been the biggest monster for me. I found a lot of relief when I started using forearm crutches to help with my balance and mobility. How does she get around? Is she able to walk on her own? I used to push myself physically to "prove" something to anyone out there - especially myself - that I could fight this ALD. What I've discovered is that we really need to learn the best way that each of us can work WITH the disease - fighting it can hurt us in all ways! Pushing myself meant that I'd exhaust myself physically which, for me, would eventually shut me down mentally. I would be on overlaod and I wouldn't know it until my brain would fog over and I no longer had the ability to think.

In an effort to keep this from getting much longer .....
Please continue to ask questions here, vent, whatever. The wonderful ladies that contribute to this site will give loads of support, and we each have similar but very different symptoms.

It'd be great if your sister could learn some meditation or find something that would help her to work with the stress her body is under. This might seem frivolous but it made all the difference for me. If I can relax then my symptoms aren't as bad and I find I have more control over my physical abilities. It also gave me a way to 'hear' what my body is trying to tell me, gave me clues to what I needed to do to help myself as I learn to hear it.

God Bless you both, she's really lucky to have you!
JoAnn

By mason5852
Posted July 9, 2009 at 8:50 am
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I am sorry to hear about your sister. That has got to be hard for you and especially for her. I have a five year old daughter who suffers from (at this point) an undiagnosed Leukodystrophy. She had two falls back in the middle of May (both of which she hit her head and had concussions). When she saw her neurologist a few days after the last fall he informed us that people with Leukodystrophy usually do take longer to recover from tramatic events on the body...so possibly your sister may take a longer time to recooperate as well. I know my daughter fell down the steps and it took her a couple of weeks to get back to her normal self. The extreme tiredness could possibly be from the Leukodystrophy as well. I know there are times when my daughter will lay around more often and need to take a nap. (She does this daily anyway as she is only five) but there are some days when she will lay around alot more than is normal for her. Your sister may be excessively tired too though b/c of her surgery...and her body needing the extra rest to recover. I hope this helps. I will keep you and your sister in my prayers.

By MBA28
Posted July 9, 2009 at 9:58 am
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My daughter is 42 and has "vanishing white matter disease" or CACH form of Leukodystrophy. She has been followed at the National Institutes of Health for 12 years until they closed the clinic down. None of the symptoms you mention seem to describe those that Kelly had/has except for the headaches. Kelly has had multiple surgeries for a fractured femur and for eye conditions but always seemed to heal normally.

By kristie777
Posted July 10, 2009 at 11:49 am
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I thank all off you to take the time to reply to me. My sister's balance is not bad, she just calls herself clumsy. Both of her hands shake on a daily basis but not all day long, just when ever they decide to. She started seeing a social worker because she has felt alone and does not understand the progression of this disease. The social worker is telling her to apply for social security. But from what I am reading I don't think it is that easy. She has been off of work for 2 and a half months now and says she thinks she has to be retrained in her job because of her memory. Does leukodystrophy rob you of memory so quick. Her neuro doc say she does not have dementia, but yet precribed her aricept. Her neuro is very suprised that Robin is doing as well as she is because her mri is so bad. And said time and space haven't caught up with each other in her case. It's statements from her doctor that make her panic because she does not know what he means. He is a good doctor though because it bothers him greatly that he can't figure this out. Thats why all the test.

Thank you again
And thank you for letting me vent because I don't know how to help her.

By britt_carrier
Posted July 10, 2009 at 1:35 pm
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Hello. Many of the symptoms you describe do sound like what I have gone through for almost 20 years. I have ALD/AMN. I was also thought of as clumsy. Please tell your sister not to delay in applying for Social Security. I did not want to apply and delayed it for over a year. I am sorry I did wait so long because now we are in great trouble financially. I had to take sick leave 3 times in the last 3 years of my employment because of exhaustion then was dismissed from my position. I also like many of these people worked in a high stress environment. I thought I would get well enough to return to work but that turned out not to be the case. Even the doctors urged me to apply but I had my hopes of returning to work. I just wanted to be able to provide for my family. I am still waiting on disability and yes, it is a fight but we all need not delay.
I have not had surgery in the past few years so I do not know how/if the recovery would be long but I do know that illness lasts much longer for me then the rest of the family. I have suffered from migrane headaches most of my adult life. I am currently being treated for severe neuropathy (burning, twitching, spasms), fatigue, depression, etc...
I also have memory and speech issues.
If you have any further questions, please don't hesitate to ask. We are all here for you.

By warriorsgirl
Posted July 27, 2009 at 12:42 pm
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Does she have a specific diagnosis? My husband was diagnosed in Feb of this year with Cadasil, all the same symptoms. I took him to ER after having a smail TIA (mini stroke) he had an MRI done showing extensive white matter. Originally they thought it was MS but after tons of blood test, mri's, spinal tap, etc. Cadasil was finally diagnosed, it is a hereditary disease. His memory is awful at times, Severe migraine headaches, depression, can be very angry at times, confusion, muscle cramping in strange places. If she doesn't have a specific diagnosis, please have them check for Cadasil, it is genetic testing through blood work. With Cadasil the blood vessels get messed up and cause strokes to happen frequently and slowly get worse. The memory is bad!!!!!

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