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Looking for solidarity with carrier symptoms

BWinVermont
0 Recommendations

I am a 41 yr old woman whose father passed away when he was 32 (I was 11 at the time). I am a ALD carrier and I am blessed with two healthy children. I have been experiencing terrible balance issues, poor circulation (the bottoms of my feet have no feeling) and overall stiffness in the lower extremities. I am an active person and much of this concerns me. Not sure if I should go to a neurologist specializing in ALD carriers. Any suggestions? or others with similarity?

4 replies

jolocny

Oh, yeah, there's lots of us out here! My balance issues grew continually worse over a few years until I found that I needed to listen to slow down and pay attention to my body. My feet are either hyper sensitive - or not at all, thankfully the stiffness comes and goes. I find that it settles in my lower back more now because I'm walking without paying attention. Mostly, I have decreased feeling in my legs and have to be careful of 'where they're at'.

Thank God you're kids are healthy! I also have 2, my daughter tested negative for ALD but my son has yet to be tested (he's almost 30).

I've found it to be very hard to accept that I can no longer hike, bike and do yoga ... so I understand your concerns. But we have to keep moving and doing all that we can, for as long as we can! It makes all the difference!

Most doctors have no clue to what we're dealing with, they can get frustrated because we're not 'textbook' for them. I do suggest that you go to someone who knows ALD, it should make the journey easier.

Hey ~ find some joy in your day and be grateful for it!
JoAnn

ROBSKID

I HAVE THE SAME THING FOR ALMOST 10 YEARS NOW. MY SON DIES OF ALD, MY BROTHER OF AMN AND I WOULD SAY MY MOM OF BEING A CARRIER. I THINK YOU SHOULD GET IN TOUCH WITH HOPKINS. IN MY ESTIMATION THEY ARE THE EXPERTS AND KNOW THE MOST OF ANYPLACE I HAVE HEARD OF. TWO OF MY GRANDSONS ARE ON THE OIL AND MY DAUGHTER DEALS WITH THEM ON A REGULAR BASIS. I DO BELIEVE THAT THIS WEBSITE CAN HELP YOU GET IN TOUCH WITH THE RIGHT PEOPLE. IF YOU HAVE NO LUCK IN FINDING THEM WRITE BACK AND I WILL HAVE MY DAUGHTER HELP YOU. YOU ARE NOT ALONE!!

DMBM

Hi BW
I am a new member of this group so I may be telling you something you already know but I get the feeling from your post that you might not know that some carriers (females) are symptomatic. You should see a specialist in ALD, any other specialist will just send you there anyway, just start at the top.

Good Luck
Denise

"....About 85-95 percent of females are asymptomatic and only 10-15 percent have adrenoleukodystrophy, though it is less severe and has a late onset...."
paper 2009 Missouri Western State University

coco1252

You need to get in touch with Kim Hollandsworth at Kennedy Krieger Institute. Her email is Hollandsworth@kennedykrieger.org

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