Cll + HSP (Hereditary Spastic Paraparesis)

[hspcll]

Looking for someone that has both of these. I am

watch and wait since 2005 with CLL , HSP was first noticed in

2006.

[cllady01 Former Volunteer]

hspcll, I am sorry, there doesn't seem to be any other members with this combination diagnosis. If you are interested, and haven't looked, there is an AMN group on Healthunlocked which has had some mention of the relationship to HSP -- at the top upper right of this page, in the Search Healthunlocked shaded area you can type in either AMN or the full name of HSP and read what others have said--to reply/interact, you would have to join that group also.

Also, it may be more than you want to delve into, or you may have already found it, but I have found a technical article on Human Molcular Genetics regarding SPG4 mutations in relation AD-HSP and the chromosomes that can be involved, other than the sex chromosomes (X and Y).

academic.oup.com/hmg/articl...

It will not give any help with CLL situation, but might help with understanding something more about HSP.

Is there anyone else in the family who knowing has HSP? Do you have a specialist in both CLL and in HSP? If not, at least a specialist in CLL will be most important for you to get as much in-depth knowledge and care as possible.

I hope you will stay with CLLSA and bring us any questions you have in that respect. It is of interest that you are 68 years old and HSP is just now being discovered---that may bode well if it is a slow developing situation.

CLL can be very indolent in some of us. Depending on your CLL profile, which FISH testing and Hypermutation testing as we as a FLow cytemotry test can give clues to, but being in Canada, you may not have access to that testing.

Are you near to any U.S. cities that would enable you to see a specialist who can do the testing, if you do not have access to that where you are?

Hope to hear you are doing well, though puzzled by the juxtaposition of these two disease.s