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MICHELLE40f

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Hi,my name is Michelle,lol 40 female from ST.Marys GA. i have recently been diagnosed with hereditary spastic paraplegia,but i personally beleive it may be PLS,or at least a co mplicated form of HSP,the reason for this is that most hsp's do not cause arm and speech problems as pls does,i also have had pls mentioned to me as a differential diagnoses from a diferent neuro,but said that i would be quite "young" for this disorder,symptoms been going on for 6 years,slow progression.

just for kicks i thought i'd add,i am a married mother of 6,been married 23 yrs. have 5 living children{one passed away from SIDS) KIDS are 10-22 yrs in age....anyway nice to meet ya'll,hope you are feeling at least OK.....{{{{{{HUGS}}}}}}}} Michelle:)
 

CindyM

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NIce to meet you, too, Michelle. I hope your worst fears do not turn out ot be true. Cindy
 

Geo

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Joined
Aug 24, 2007
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Hi Michelle . I beleive theres a Genetic marker for HSP hence the word Hereditary . Did anyone do a blood marker test ? Theres another group on Yahoo that has PLSers and HSPers . PLS Friends . Im seeing more and more young people that have been diagnosed " PLS " I beleive theres more to it than that ,i beleive theres a rare occurance of look a like diseases and for lack of a better diagnoses they grab the PLS label and stick it on us . There are what i call Varriants of Motor Neuropathies . Motor meaning movement and Neuro meaning of the central nervous system Pathies meaning the path of a particular disease . I E symptoms etc etc . For the lack of research and our Technology being behind . Even though we have all these magic machines we are still way behind the curve . We Put more money into war machines than we do into saving lives . Prorities . I hope you find answers to your questions and feel your not alone ,because your not . God Bless Geo
 

MICHELLE40f

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thanks

Hi Cindy and Geo,thanks for the welcome etc.....Cindy my worst fear already came true(when I lost my son)....I am a pretty tough cookie,will handle my disease,but thanks,i know what you mean...

Geo.....I havent had any of the genetic testing,simply because they can only test at this point for 3 of the 33 known gene defects,$5,000 for blood test and insurance will not cover ,because its deemed "experimental",a lot of docs and people dont even reccommend the gene testing for this reason,I may not even have one of the defects they check for,so i still wouldnt know,and be out a few grand. Michelle
 

Geo

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Yap Your right . It is Expensive to get sick . All the Tests in the world wont take it away . And i beleive its like throwing Money in the river ,It wont change the flow of Water . Best of Luck Geo
 

CindyM

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It must be terrible to lose a baby. That happened to someone I know and all these years later they still bear the scars.
 

MICHELLE40f

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ST.MARYS
yes GEO ,i totally agree with you

yes Cindy,tis the worse to lose a child,sorry you have to know someone this happened to also,ya never get over it,but you learn to adjust.... thanks again ya'll for responding:)

ps. HOW ARE YA'LL FEELING? {{{{{{{{hugs}}}}}}}}Michelle
 
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