Hi, I have HSP as well. The frequent urinary urges is pertty usual with HSP. Since you have spaticity in your legs, having it with your bladder is not uncommon: so do I. Your headaches is something I can comment on as well. I regularly have Migraines which average 14 per month based on last year's figures. Nerves are areal Pain! Baclofin as well as Nuerontin can be benefical in helping control the spasticity. Since there are as many as 24 variable sites, genetic testing is a waste of time and money. There is an organization which maybe be of more help. This is the Spastic Paraplegia Foundation Inc. Here is there web site address: www.sp-foundation. org . If you would like to get in touch with me, my e-mail add is gvanness_7458***@****. Hope this has been of some help; hang in there beleive me there are worst cases out there, I have seen them.
No, especially after several year you are expected to have some type weakness/paralysis but the dominant featue is spasticity of the legs
Generally ,If muscle weakness is present, it usually involves iliopsoas muscle (flexion of th hip), tibialis anterior (dorsiflexion of the foot), and, to a lesser extent, the hamstring muscles (bending the knee).
Take care
Bob
Well I certainly have the gait problems and hyperreflexia (along with the other problems I mentioned).
Is the paralysis so out of character with HSP as to make it very unlikely, or do we just not know enough about HSP to say with any certainty?
By the way, the LP's came back negative as well.
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. The symptoms and story you describe is odd for Hereditary Spastic Paraplegia. This condition generally presents with variable progressive gait problems that finally end in paralysis, not a sudden transient paralysis that then resolves partially. Your story is indeed more consistent with a transvere myelitis or spinal cord injury of some kind (vascular or inflammatory). It sounds like you have had the right tests and I would also recommend the genetic testing, since there are always new variants being discovered. I would make sure that your evoked potentials were done on the lower extremity and the upper extremity (the lower is abnormal in HSP, but the upper is often normal). With your current symptoms of dizziness and headaches, I would make sure they have evaluated your posterior circulation blood vessels. Veterbro-basilar insufficiency can cause transient paralysis, gait problems and dizziness, headaches. An MRA (Magnetic resonance angiogram) would be a place to start, but you may need a formal cerebral angiogram.
I hope this has been helpful.
I also forgot to say I'm a 27 year old male
Hi
I will begin by saying that the diagnosis of HSP is a diagnosis of exclusion , meaning the other disorders that cause similar picture should be excluded by detailed investigations, and I'm sure your doctor did that. I'm not sure if genetic testing is available for the few abnormal genes out of the research media?
Any way, HSP is divided to
1- Pure type were only spastic lower limb picture like you but some reports mentioned that you may get bladder problem and some sensory complaints.
2- Complicated type were the person may get any other neurological symptomes and usually starts at a later age (after 30)
The obligatory criteria suggested for the diagnosis of pure HSP includes:
1-positive family history if of a dominant inheritance only
2-progressive gait disturbance, spasticity of the lower limbs, and hyperreflexia of the lower limbs.
3- The most important is "Gait disturbance progresses slowly without exacerbations, remissions, or worsenings" so what happened 14 years ago were weakness was the dominant feature and was sudden is not in keeping with HSP and could be a different entity though if it was months apart we could think of infectious causes or even autoimmune diseases
Regards,
Bob
Oh, also, I have problems with frequent urinary urges, which has been getting worse as well.