Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hello and welcome. The answer to your question is yes. Go to our SPF website www.sp-foundation.org and on the home page you will see on the right hand side under Hot Topics -- Email Support Groups. To register for the HSP or PLS Support group, the direct link is http://www.sp-foundation.org/list.htm but you will find a lot of useful information in the SPF website. This link will guide you. You will want to join the HSP List since there are many people on the HSP List who have children with HSP. I'll take the liberty of forwarding your question to the HSP List so people will start replying. Gentner, PLS sp-foundation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hello Bearsnake, You're on the right site but there are two different disorders on our Sp-Foundation web site one is Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP). Your message has appeared on the PLS side. If you need the HSP go to the following and register for that - _http://www.sp-foundation.org/list.htm_ (http://www.sp-foundation.org/list.htm) after receving confirmation you will start to see people responding to your questions. Welcome to our group. If you already haven't please look at the offical site at _www.sp-foundation.org_ (http://www.sp-foundation.org) . Flora/Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Welcome to our group It's the place to be if you have upper motor neuron problems. Sounds like you are in the early stages of diagnosing. This is a good group for support and information. To my knowledge an MRI is not diagnostic of HSP or PLS however an MRI can show lesions, plaques, or cerebellar atrophy which identifies other diseases such as parkinson's, MS. Don't get too worked up yet about what you might have passed to your son. Example - I was first told I had MS and I cried, called all the family. Fast forward 3 months when they told me I had ALS with 6 months to live. I found myself saying MS wouldn't have been so bad. It appears I have neither. There are much worse things to pass on than HSP like Huntington and you may not be passing anything along. You are doing the best thing you can right now- gathering info. In the beginning some upper motor neuron diseases than may be thrown your direction are: MS, myasthenia gravis, HSP, ALS, PLS, leukodystrophy, supranuclear palsy, Stiffman syndrome and more. We are here to help Eva > > Hello, I don't know where to start. My wife brought me home some > information from work she had printed from SPF. I've been searching > in this site finding somewhere to go, when I finally came to this > messege board. I have another MRI coming up this month to see if my > two year old son (not walking yet) has HSP. Are there any chat rooms > availible, so I can talk to someone who's dealt with this. Right now > it's a waiting game for me. Is there a place to register on the SPF > website? > Quote Link to comment Share on other sites More sharing options...
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