HSP (Hereditary Spastic Paraplegia)

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Just J

Distinguished member
Joined
Oct 30, 2007
Messages
300
Reason
DX UMND/PLS
Diagnosis
01/2010
Country
US
State
MD
City
Havre de Grace
Is there anyone out there awaiting diagnosed who have looked into HSP or doctor mentioned symptoms were like HSP? My husbands symptoms were compared to this but no diagnosed of HSP (not ruled out yet). Would rather be HSP then ALS ~ J.
 
Just J,

Just curious I forget when your husband was supposed to go to drs. Was the mention of HSP recently or at a past drs appointment? I agree HSP would be much better than ALS.
 
justj

hsp is pure umn dysfunction that mainly effects just the legs,pls gradually over years/decades effects upper body and bulbar areas as well.
at the start it's hard to say which one it is,as like myself it started in my legs first.
your husbands neuro really needs to follow his progression for 3-5yrs to see if the umn symptoms spread.
i presume if hsp is suspected he has no lmn signs/symptoms as yet to suspect als.
hang in there,we are all here to help.
take good care.
caroline:-D
 
Just J
After my diagnosis I started to take a careful look at possible herditary entities. It is possible there maybe some clues to his condition with a investigation of other family members. It is also possible this could also be a sporadic mutation for HSP. I always thought my grandfather and father had really bad arthritis, but I know beleive it is some sort of hereditary lower motor neuron disease. Family history is very important.
 
Just J,

Just curious I forget when your husband was supposed to go to drs. Was the mention of HSP recently or at a past drs appointment? I agree HSP would be much better than ALS.



Vist with Johns Hopkins is in September. I came acrossed HSP in medical notes from Feb 08 visit with last neuro. I looked into this illness and symptoms are so close since he has little upper body problems. It gives me hope anyway to think that his condition might not be ALS.
 
hsp is pure umn dysfunction that mainly effects just the legs,pls gradually over years/decades effects upper body and bulbar areas as well.
at the start it's hard to say which one it is,as like myself it started in my legs first.
your husbands neuro really needs to follow his progression for 3-5yrs to see if the umn symptoms spread.
i presume if hsp is suspected he has no lmn signs/symptoms as yet to suspect als.
hang in there,we are all here to help.
take good care.
caroline:-D



Yes Caroline, symptoms so far are limited to the legs but he has progressed in 3 yrs from playing golf and doing 5 miles on the treadmill to using a cane. I think a wheelchair is in the not too distant future. I only recently became aware of HSP so thougth maybe that was the problem since we have no diagnosed yet. I am also discovering why the neuro needs to follow the progression for 3-5 yrs. Its all making much more sense to me now that I've been doing sooooo much research on his symptoms. Thanks for the insight.
 
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