Hereditary Spastic Paraplegia and Groin Pain

I have a family member who has been diagnosed with  Hereditary Spastic Paraplegia (HSP).  He has been through years of testing to rule out many other neurological conditions (PLS, ALS, MS).  He has been having chronic pain in his groin area for over 3 years now.  The pain comes every other day like clockwork.  He has seen 3 different urologists and none have been able to offer any assistants.  The pain is now so sever he can not eat, sleep, or function.  Could this be related to the HSP or is it possible he was misdiagnosed?  Have you heard of anything like this before?  Everyone seems to be out of answers and he can not live with this pain anymore.  I am desperate to find a specialist for him, he has seen so many neurologists with no answer.  Please help…

[DrNavneetMD]

Hello dear,
The groin pain seems due to the HSP.
Hereditary spastic paraplegia , refers to a group of inherited disorders that are characterized by progressive weakness and stiffness of the legs .Weakness is most notable at the iliopsoas muscles .Regular physical therapy  is important to maintain and improve range of motion  and muscle strength. Furthermore, PT is necessary to maintain aerobic conditioning of the cardiovascular system. Although physiotherapy  does not reduce the degenerative process within the spinal cord, individuals with HSP must maintain an exercise regimen at least several times each week, as guided by their physical therapist. Exercise can help retain or improve muscle strength, minimize atrophy of the muscles caused by disuse, increase endurance and reduce fatigue, help prevent spasms and cramps, and maintain or improve ROM. Exercise also has a positive psychological effect, helping to reduce stress and produce feelings of well-being

.Refer http://www.emedicine.com/pmr/TOPIC45.HTM#section~Clinical http://www.ninds.nih.gov/disorders/hereditary_spastic_paraplegia/hereditary_spastic_paraplegia.htm
Best

[mom1123]

I am related to webster123, this patient has had genetic testing in order to isolate the hsp gene.  The marker was not found in his dna.  There are no other family members maternally or faturnally that are aflicted by any neorological disease.  The neurologist in Boston stated that this patient has an atypical form of hsp.  What does this mean,  Furthermore, the neurologist states that the pain....which is in the perineal area between the rectum and the scrotum is not due to the hsp and sent the patient to a urologist who first began treating for prostatitis with long periods of antibiotics.  Then the urologist decided that a cyst midling to the prostate and envolving the ejaculatory duct was the casue of the pain.  The urologist dicided to deroof the cyst and insert a cathater for 5 days.  When the cathater was removed the balloon was not fully deflated and caused scarring and now the patient has a 2cm stricture in the ureter and is facing recontructive surgery later this month.  Prior to the onset of hsp the patient was treated for bipolar 1.  The onset of mania began when his mother was diagnoised with breast cancer.  He was treated with litheum with good result but was kept on the drug for 6 years during which time he became symptomatic of what seamed to be a balancing disorder.  The patient asked the Psychiatrist if this could be caused by litheum toxisity and the Dr. denied that it was but still took him off the litheum.  That was approximately 5 + years ago.   There have been no episodes of mania since 1998.  He was taken off litheum in 2003 and still had no manic episodes.  He has had two depressive episodes approximately 1 year apart, summer of 2007 and this june 2008.  Should he be treated as a patient with a mood disorder or a patient who is very depressed over his inability to ambulate his botched urological proceedure and his chronic perineal pain (of no ediology)?

[mom1123]

Mom123 re hsp and mood disorder posted June 9, 2008 @ 09:20pm