I am 43 years old and I have known I was a carrier of ALD since I was 16 years old. My brother died in 1984 after 7 long years battling ALD. I also have a cousin who died in 1999 from ALD and a 32 yr old male cousin with AMN. I participated in the Lorenzo Oil trial at Kennedy Kreiger in 2006, I had to withdraw from the study due to the ill affects the oil had on my blood levels. My progression started when I was in my early 30's with stiffness in my lower extremities upon standing from sitting too long. I was living in Tennessee at the time and my supervisor had read an article in a magazine about ALD and the study. I traveled to Baltimore and underwent lots of testing from MRI's to EMG's and cognitive testing. They suggested the low fat diet of 27 gms a day and the oil. As I mentioned before, I had to halt the trial when my blood levels dropped in about everyway. I continued to watch my fat intake. I found a neurologist here in Savannah GA, that had actually worked with Dr. Moser. What a god send. I currently take Baclofen 30mg TID and Gabapentin 300mg TID. My symptoms have come to include leg spasms, loss of balance, HYPER sensitivity in my lower extremities, there seems to me to be a delay in the message from my lower half of my body to my brain. Thus I fell quite a bit because by the time I realized I was tripping on something it was too late and down I went. I also have incontinence issues that are helped with Toviaz. As with some AMN carriers I also have issues with my Thyroid. What fun this all sounds like huh? LOL! I have read alot of the blogs on here and plan on talking to my doctor about my kidney functions, I wonder if I am emptying like I should. I am so very happy to have found this site. No one around here has what I do. I am blessed to have a son that was tested negative invitro for ALD my daughter has elevated levels of VLCFA and appears to be a carrier. She has chosen to not have children so perhaps this genetic mutation has halted in our family line. If anyone has any ideas of things that they have tried that help with the symptoms that doesn't include more drugs I'd love to hear them. God bless you all and thank you for taking the time to read my blog.
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