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Anyone out there heard of Adrenoleukodystrophy (ALD)?

Posted by beverlymarks @beverlymarks, Jan 3, 2020

Is anyone out there heard of Adrenaleukodystrophy? It is a genetic disease and no cure. My brother died 65 years ago and my son died 30 years ago.

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veteranspouseinpain | @veteranspouseinpain | Jan 8, 2020

How's your son. U know what's funny. Ever since by husband got hurt I think ty miliary. Nobody asked my how I'm doing. I know it's hurtful the things that but I feel that way all the time.

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1 reply
veteranspouseinpain | @veteranspouseinpain | Jan 8, 2020

Does that happen to you a lot

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beverlymarks | @beverlymarks | Jan 8, 2020
In reply to @veteranspouseinpain "How's your son. U know what's funny. Ever since by husband got hurt I think ty..." + (show)
@veteranspouseinpain

How's your son. U know what's funny. Ever since by husband got hurt I think ty miliary. Nobody asked my how I'm doing. I know it's hurtful the things that but I feel that way all the time.

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Thanks for asking I lost my son 10 years ago due to the disease Adrenaleukodystrophy. I hope no one has to go through that with a loved one.

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beverlymarks | @beverlymarks | Jan 8, 2020
In reply to @colleenyoung "Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die..." + (show)
@colleenyoung

Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?

Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.

Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?

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I was Diagnosed with Ald. I can say I noticed.3 years ago with the neuropathy in my legs. I now have to use a walker to get around and balance. I also developed skin itching. Also Irritable bowel syndrome. My neurologist has never seen a patient with Ald. If I could I would do stem cell. I would also take Lorenzo's oil. It has not been recommend. If anyone has any information, please let me know

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jan 8, 2020
In reply to @beverlymarks "Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about..." + (show)
@beverlymarks

Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about hyperbaric chambers. Produces more red blood cells.

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A few members on Connect who've mentioned hyperbaric oxygen therapy may have some input for you on this treatment in general. @shwetha @thompsonm mentioned it for treatment of hypoxic ischemic encephalopathy, and @ndttech @ericvnelson @navid80 mentioned it in the context of neuropathy. @johnbishop may also have some input.

Have you read about treatment of adrenoleukodystrophy (ALD) specifically with hyperbaric oxygen therapy, @beverlymarks? If so, what were your thoughts from what you read?

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 8, 2020

Hello @beverlymarks, I found a little information on the treatments you mentioned but I'm not sure if you have seen it or not.

Late onset adrenoleukodystrophy: A review related clinical case report
-- https://www.sciencedirect.com/science/article/pii/S2405650219300073

Has your neurologist mentioned trying any type of treatment or therapy?

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beverlymarks | @beverlymarks | Jan 8, 2020

Thank you so much for the information ,far more than my neurologist has given me. I had 2 MRI s and didnt see much change. I also had a vlcfa blood test and he said they were not all high. I have been going to PT 3 x a week.I am also taking hydrocortisone 10 mg 2 x a day. I keep asking him about new treatments and he said there were none. I have a 40 yr old son that is affected with this disease. He has the E D so he is not able to get a erection. He also has IBS. I pray that he is not affected with any other Symptons. I advise him to go have MRI s but his insurance co doesn't pay for all of it. Certainly if you can direct me in another area to get more answers. I will be so grateful.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 8, 2020
In reply to @beverlymarks "Thank you so much for the information ,far more than my neurologist has given me. I..." + (show)
@beverlymarks

Thank you so much for the information ,far more than my neurologist has given me. I had 2 MRI s and didnt see much change. I also had a vlcfa blood test and he said they were not all high. I have been going to PT 3 x a week.I am also taking hydrocortisone 10 mg 2 x a day. I keep asking him about new treatments and he said there were none. I have a 40 yr old son that is affected with this disease. He has the E D so he is not able to get a erection. He also has IBS. I pray that he is not affected with any other Symptons. I advise him to go have MRI s but his insurance co doesn't pay for all of it. Certainly if you can direct me in another area to get more answers. I will be so grateful.

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Hi Beverly @beverlymarks, Here is a video Q & A and a discussion on IBS that might help for your son.

> Groups > Digestive Health > Video Q&A about IBS and How We Can Help
-- https://connect.mayoclinic.org/webinar/on-facebook-live-ibs-and-how-we-can-help/

> Groups > Digestive Health > IBS: Having a hard time
-- https://connect.mayoclinic.org/discussion/having-a-hard-time/

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1 reply
beverlymarks | @beverlymarks | Jan 8, 2020
In reply to @johnbishop "Hi Beverly @beverlymarks, Here is a video Q & A and a discussion on IBS that..." + (show)
@johnbishop

Hi Beverly @beverlymarks, Here is a video Q & A and a discussion on IBS that might help for your son.

> Groups > Digestive Health > Video Q&A about IBS and How We Can Help
-- https://connect.mayoclinic.org/webinar/on-facebook-live-ibs-and-how-we-can-help/

> Groups > Digestive Health > IBS: Having a hard time
-- https://connect.mayoclinic.org/discussion/having-a-hard-time/

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Thank you so much John for enlightening me and my son. I will certainly pass it on to him.Keep me abreast of Adrenaleukodystrophy and Possible tests.

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