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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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.
Does that happen to you a lot
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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.
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?
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
Has anyone tried hyperbaric chamber for any of these problems. I have been reading alot about hyperbaric chambers. Produces more red blood cells.
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?
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
Has your neurologist mentioned trying any type of treatment or therapy?
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.
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
> Groups > Digestive Health > IBS: Having a hard time
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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