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Danni1000b

Member
Joined
Jan 31, 2011
Messages
14
Reason
Learn about ALS
Country
UK
State
Surrey
Hi all,

I have posted on this forum before and also on the "Do I have ALS" thread here:

https://www.alsforums.com/forum/do-i-have-als-als/15385-another-confusing-letter.html

For the last 18 months my husband's neuro was 'labelling' him as having PLS but monitoring him with regular EMGs for 5 years to rule out MND basically whilst they were treating him as having PLS they would not commit themselves to a firm diagnosis which I believe is quite common.

However, over the last six months my husband's bladder problems have been increasing in severity. This led his neuro to run an extra blood test. We didn't think anything of it only to arrive at a routine appointment yesterday to be told that they have disganosed him as having a genetic disorder called adrenomyeloneuropathy (AMN). We nearly fell off our chairs!

His neuro (at the National in London) told us he has never seen a case of it before and it is rather rare.

I do not think that this is necessarily an easier ride than PLS from what little information we have it appears to be similar to primary progressive MS, there is no cure and there is also the genetic side of things to consider so my husband's brother has to now go through a blood test to rule out having the condition. We have also been told if we wanted to start a family we would have to use IVF to ensure that we did not have girls (girls are carriers and pass on the condition to their sons) so it seems we may have a new battle to fight.

I just thought I would update you all and perhaps it is something that those of you guys that still do not yet have a firm PLS diagnosis might want to mention to your neurologists.

Thank you for all your help and support over the last 18 months and I wish you all the best of luck in your journeys...we are off now to find an AMN forum!

danni xx
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
Thanks for letting us know. Good luck to you all!
 

Alyoop

Very helpful member
Joined
Jul 5, 2010
Messages
1,782
Reason
DX UMND/PLS
Country
NZ
State
NZ
Glad you have a firm diagnosis, it's a relief in itself. At least you can have a bit of a plan and no in what direction things will head. I am sorry that it's something progressive. I wish you the best on the journey and thank you for posting.
Aly
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
.....wow...wat if somebody says....wats u got then mate...i got amn....wats that then....andreno...........................myln.....i got a bad back.......
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
sure is danni........gotta av a chuckle...ant we.....god luck..johnno
 
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