hsp

Hi all, I'm a long time reader of these forums but this is the first time I've felt inclined to post in response to the many, many people who appear to be using the internet as their 'reliable' source of information. I have been recently diagnosed as having Hereditary Spastic Paraplegia, a...

it just came to me yesterday that we dont have the spf site on the pls forum. this is a very good source of info on hsp/pls plus there are regular updates and 3 yearly news synapse to download or print. they provide great advice from living with pls to caregiving,any news updates plus...

Here's the chance for those that complain research is slow, to step up and be a part of something. AL. Twenty-one NEALS ALS centers across the U.S. are seeking individuals to participate in a specimen collection study. The purpose of the research study is to collect blood (plasma and DNA)...

ok, this is a bit of a touchy subject for me. i first started having occasional problems a few years back and was sent for a bladder test. in the test they attach something to you and fill your bladder up with water till your fit to burst,then stand you on some paper and ask you to cough to see...

Just received and read my neuro's notes from my evaluation visit. Now HSP is "suspect" and we may have in the "differential," meaning mix of conditions to consider, spinocerebellar atrophy. As posted in another thread, I'm not willing nor in a position to fork out $1,000 for a $7,000 genetic...

A quick update. My neuro wished that I have them look into my new insurance company about paying for an Athenia genetic marker test to confirm or rule out Hereditary Spastic Paraplegia. After waiting a month, I received a call from his office. The secretary has gotten a big run around and a...

Hi! I'm new here let me give you a little history. I didn't have any one definitive test for PLS/HSP (hereiditary spastic paraplegia). The doctor's just ruled everything else out. Is this normal or is there a test? Also, my sister has something very similar to this. Although, none of the...

Why am I not surprised? I was asked by my excellent PCP to see a "real neuro MD" rather than the neuro adult NP i've been seeing since '04. I complied, my NP was not surprised and because my case is so complicated I was assigned a "real neuro MD." My first visit to him was on Thursday this...

I was release last Monday from in-home to outpatient physical therapy. I went to the first session and they spent an hour and 15 minutes with me for the initial evaluation and exercise regiment. I was impressed and excited as to what this can do for me. Fast forward to Thursday, yesterday...

Well, my situation is a tad different than some people in this forum. I am home bound due to total disability from Hereditary Spastic Paraplegia or HSP. It is a serious deteriorating motor neuron disease that has no treatment or cure and only continues to get worse in degeneration of the...