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ADLD anyone with the same illness

dragonfly24
7 Recommendations

I have this ADLD but I know it is rare but if someone out there has the same thing. I would love to be there email friend.

Explore topics in this discussion:

Cancer Zanaflex Spasticity Baclofen Leukodystrophies Weakness Addison's disease Pain Provigil Depression Leukodystrophy

53 replies

Mick

My wife and her brother both have adld, there are a few others and i am trying to get a good network together. Can I call you sometime later today or tomorrow? Thanks, Mick.

dragonfly24

Hey, is great to finally know there is someone else out there and I am not alone. I have the ADLD and my mother did and her 2 brothers and so on. This ADLD went on as far back as the 1800's in are family.

If you would like to chat or email me my email is (momma2506@yahoo.com). Have a nice Day :)

AuntLavonne

Adrenoleukodystrophy (we've abbrevieated it ALD - so I want to make sure we're talking about the same condition) has had a huge impact on my sister's family. It was only identified in the last year. Her daughter is a carrier and her 4-year-old grandson has ALD and Addison's Disease.
Given his dietary challenges, I have become involved in trying to get recipes to her. I decided to put them on a website so that anyone who needs an ALD diet can access them and share ideas. The website is http://daltonscookbook.110mb.com

Be assured you are not alone.

msh

Hi, being from South Africa there is very little info available, two known cases I think. My fiance was diagnosed in Nov. 2007 and I feel so helpless most of the time. Any advise welcome !!! Thanks

BMA

sorry to ask such a silly question but what is the difference between ALD and ADLD?

Thanks, Brenda

Mick

adld is adult onset autosomal dominant leuko, no known cause, no way to specifically identify it, other than it hits most in mid 40's, and mri shows difuse white matter changes.
ald is adrenoleukodystrophy with known identifiers like long fatty acids, and there is a lot of information on this leuko, unlike ADLD

FBMOM1

Thank you so much for the information. I have been hearing so much about ALD & ADLD that I thought I had them confussed. I guess I have the ALD. My blood lab work showed my very long fatty acid chain to be off the chart. I have had symptoms of something for the last 2 years and they were about to give me a MS diagnosis. But now it is an ALD diagnosis with symptoms. The good news is now that I have tested out positive the new medication I am taking has done wonders. I am on Zanaflex. Now I know that I have suffered symptoms for going on 10 years. I have had 75% numbness from my waist down for over 10 years and you just get used to it. But the new medicine has brought back sensations and feeling I have not had for over 10 years. I understand I will be on a lot of different medication to help treat my symptom, but at least they know what the problem are caused from. Can sombody be just a carrier with out the VLFA chain and still have the same symptoms?

lauren54

Yes you can still be a carrier and not show symptoms, that's what happens to most women.

FBMOM1

VLCFA
Can anyone explain why my blood work would show very long chain fatty acid, but my DNA test does not show ALD in the family. I have the horrible symptoms and my new medication is helping but I was shocked it did not show up in my DNA. I am pleased that ALD is not in the family but is there some other Genetic test that will need to be run to clear the family or is my VLCFA a freak of nature. I am assuming I have some sort of Leukodystrophy but not for sure. Please advice!

Charlestonlady

I also have tested positive with high VLCFA levels, diagnosed with ALD last August and there is no one else in my family with any symptoms. What's really strange is I have 3 olders brothers and 1 sister and they're all fine. My mother also never showed any symptoms. I'm interested to learn more about the Zanaflex you've been put on and any side effects. The only med I'm on right now is Baclofen and only at night as it tends to make me tired and Cymbalta to help with depression. I'm 54 with the symptoms starting in my late 40's. My walking is very limited, constant burning, weakness and pain.

blissboys

My 3 boys have ALD, my 5 month old hasn't been diagnosed yet. His VLCFA test came back borderline high without fasting. So, I'm pretty sure he has it along with his 2 older brothers. (ages 3,4)

I have 6 brothers (ages12-30), and they don't show any symptoms. No one in my extended family seems to have this either.

blissboys

FBMOM1,
Are there any side effects with the Zanaflex?

sjm

Hi
Blissboy are your brothers going to get tested for the VLCFA?

FBMom1 where did you have your DNA test done? What did that lab say? Is it just that they are having difficulty identifing the gene? I known it took for ever for my family to get a gene diagnosis.

My newphew has ALD and my sister has tested positive but the rest of us are negative and I thought that was very strange too.

FBMOM1

VLCFA
Thanks for the feedback. Unfortunatly my brothers have both expired. My brothers were twins. One passed away at the age of 43 with colon cancer and a history of what everyone thought was cerebal palsey. My other brother was killed in a car wreck at the age of 50. He like me was diagnosed with MG or Myathenia Gravis with other unknown symptoms. He was being tested for symptoms simular to mine. My mother who just passed away from sudden CHF had suffered simular symptoms to mine for years. But unfortatully she passed before I was tested and showed the High levels of VLCFA. The Zanflex has been like a miricle to me. I still have stiffness in my legs at night but I can go to sleep, I have no muscle twitches at all. My legs may be a little sore when I get up in the morning, but I just take the medicine again and I am fine. I think my body has been numb for years from the waist down and the medicine has opened up recepters to the brain that allow the muscle to work correctly. The doctor said it is a spinal cord injury medicine and they have had good outcomes with the medicine. I have not had any side effect. I have also been on Predisone off and on. I take that for my MG symptoms and I have an IVIG every 4 to 6 weeks. That is Globaglobian or good anti-bodies that are pumped back into my body. I am still working and raising my grand-daughter. My other good news is since the new medication my incontinance problems have also improved. It is sort of unusual to have to rare auto amunine disease like MG and ALD, but I think the treatments compliment each other. My DNA test was run through a company called Athena Diagnostics. You can go on line with that name and ask for ALD or the test # for the ALD is # 815. My PCP called the company and they sent him the test kit box. I pulled the paper work off the web. The paper work had to be signed by me and my doctor and the form was sent in with the lab work. A few days later I recieved a letter back from the company which asked if I wanted to pay $365 for insurance just incase my BCBS would not pay for the genitic test that sometime could cost between $1200 to $1800. The company also said that if all was paid by my insurance company my money would be returned otherwise the most I would have to pay was the $365. It was worth that just to find out. My daughter and grandsons also all paid and were all negative.
Hope that helps.

robert671

37 years old I have it my twin has it and it stinks.

LDR

My wife was just diagnosed with ADLD after 12 years of testing at the Mayo clinic in Rochester, Mn. It is caused by a gene mutation which is quiet rare. Her mother , aunt & sister all had the same thing . There are 2 doctors in San Fransico who are doing research. My wife's problems stated 20 years ago with her bladder. She now is pretty much bed bound

robert671

I have ADLD, Last night was probaly the worst night I ever had. I Got up to use the bathroom and I took me 45 minutes to crawl back to my bed.

Is this the a preview of what I have to look forward too? I am having a bad day.

dragonfly24

My mother was bed bound also. She had a lot of bladder issue.

dragonfly24

My mother had issue's like that with crawling. Yes this is what you will go threw. My mom was wheelchair and then got bed bound.

My self I am still in the very early years of this disease.

robert671

My motherhad it too (along with my uncle, grandmother, great grandfather,my aunt and twin brother). I saw what she went through. I have a 4 yr old daughter, I am afraid that she will watch me go through life with these years will be her memories of me.

I had a touch of the flu I think that is why I was so weak, I feel somewhat back to normal today.

I am only 37 but when I reflect back I can see some of the beginning signs back in my 20's.

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