Early adult cerebral symptom

[bozzer]

Hi. Can anyone please share the early symptoms of the above please. I suspect I have this as I am seeing some behavioural changes and wondered if they were relevant while I await the MRI.

Thanks

Mark

[StevenSims]

Hi Mark,

Sorry to hear that you think you have Cerabral involvement, from what I've read is that it starts with headaches then eyesight then Dementia and schizophrenia symptoms? All the best with the MRI I'm hoping it's clear for you!

All the best

Steve

[bozzer in reply to StevenSims]

Thanks for the cheery reply! MRI tomorrow

[StevenSims in reply to bozzer]

Good luck! Mines booked for march!

[bozzer]

Good luck for you. I am experiencing difficult swallowing, legs getting worse suddenly, am slurring and extreme emotions.

[cdp71]

A fellow AMN'er that I used to talk to unfortunately contracted adult-ALD and passed away. I talked to him a couple of times in the early stages. Obviously, I did not probe too much. However, he mentioned something with his eyesight. I remember it being in his peripheral vision. Not too long after that he that he was confused and unable to talk when I called though he seemed fine to me. His decline appeared rapid. This is truly a brutal disease if you get the cerebral form. I hate to be a Debbie Downer, but I suspect that this is something that is on everyone's mind and you asked the question. Good luck with the MRI. I have not had one in decades. Party because I am a pu*** and partly because there is little that they can do given my age (44).

[bozzer]

Many thanks for this. Don't forget BMTs if the timing is right. The only treatment for cerebral ALD/AMN if you are in the right country Thanks again

[bioting]

so there is a cerebral version? whats the other version?

[dryder]

My father passed away from the cerebral AMN. It started with confusion, forgetting things like how to get home, where the house was, etc. He then had difficulty with his legs, bowel movements, etc. By the time I was called, he was in the hospital unable to walk. From there, he went to not able to talk, not understanding, dementia, and loss of sight.

I am 50 years now having walking and bathroom issues. My son became very sick at 24 years old and we almost lost him because I couldn't get anyone to believe me about the possibility of AMN. He now is 29 years old and needs assistance walking. He get a MRI every 6 months to check for cerebral issues..luckily, none. Doctors say only 25% get it so my father was in the unlucky few and died at 52 years old.

Hang in there..the doctors are working hard at finding a cure! I am sadist for the little boys who don't get to grow up and go through this at such a young age. For them, both my son and I go to the specialist for AMN and explain what is happening and give blood whenever needed for research.

Also I found that sites like this help us all

[bozzer]

Great reply thanks

[campbellkristy]

My husband is 33 and they just found a lesion on his brain stem the size of a walnut. He started having seizures and headaches about three years ago. At that time we had no idea it was ALD. He had been diagnosed with Addison's at 18 but no one ever checked into that further. Sadly. He was hospitalized in April for uncontrollable seizures and the MRI at that time showed "no gross abnormalities". (What ever that means) Christmas Day we were in the hospital again for the same thing and got the news of the brain lesion. The Drs here ( Mississippi, USA) have basically written us off and told us to go home for there isn't anything they can do for us. And if it weren't for our LOCAL DR we still wouldn't have a clue why all this was goin on as she was the one to unofficially diagnose him and had the VLCFA test ordered through a neurologist .... he's having trouble with his sight also and has to use a wheelchair, confusion, bladder problems, has been admitted FOUR times in the last 4 months with pneumonia, the backs of both legs and both feet have neuropathy, his hair is falling out..... Is this the cerebral kind?? I've read all the information I can find on the internet about the disease and I think it is.

Also his nephew was just tested and they found he has ALD.

Any one ever saw anything like this? How long can I expect him to be "ok"?

[cdp71]

I am sorry for what is happening to your husband. Probably the best place to get information is from Dr. Raymond. He is, to my knowledge, the expert is the US. His contact information is [e-mail], 612-625-5859612-625-5859, University of Minnesota. I have not really contacted him so I cannot say how responsive he is. Maybe others on this board have better info.