Recent content by Suzannah

Hi all, Some of you know me here, but for those of you who don't, I was diagnosed with the UMN Hereditary Spastic Paraplegia at Houston Methodist back in 2014. At the time, I was in my 30s and experiencing a great deal of stiffness in my legs, difficulty walking, and had started falling. I...

Hi Scottishgirl, I'm a "previous poster with somewhat similar symptoms", so I thought I would answer. In 2014, I was diagnosed with an upper motor neuron disorder after exhibiting pretty classic UMN symptoms - spasticity, hyperreflexes and clonus. In 2015, I was "undiagnosed" by the NIH when I...

Thanks, all. These responses have been super helpful. I got some things off of Amazon to help around the house with opening jars, etc. I can still use scissors to cut open food packages, etc with my dominant hand, but I keep forgetting and keep trying to open them with my left hand, and end up...

Hi all, it's been a minute since I last posted here, but I still see lots of familiar names. For those who don't know me, I was diagnosed with the UMN disorder Heriditary Spastic Paraplegia in 2014 but was then undiagnosed by the NIH in 2015. After years of searching for an answer, I finally...

Well, tomorrow's the day. I have an in-person neuro appointment in the morning. I usually go to my appointments by myself, but a friend is going to FaceTime into the appointment with me for support. I'm pretty nervous. Wish me luck? Suzannah

Hi Nikki, thanks for the response. After I wrote at the end of October, I tried to get in to see a neurologist, but was told it would be June before I could be seen. I was able to get an earlier appointment in Feb in another town but just recently was able to get one at the end of January in...

Hi all, I used to post here a few years ago in the HSP/PLS forum after being diagnosed at Houston Methodist with the UMN disorder HSP, based on spasticity, hyperreflexxes, clonus, and increasing difficulty with walking. I later went to the NIH to be in a study for HSP and was told that I didn't...

Hi Kristina, Here's a picture of the nighttime splint that I use for both of my hands. Restorative hand - Neurorehabdirectory.comNeurorehabdirectory.com The padding is soft so it is comfortable to wear, but the inside is rigid and keeps my hands from curling up too much. They bring a lot of...

I have my appointment with the research doc tomorrow morning at 8:30am. I have to get up early and make a 90-120 min drive through rush hour traffic to another city. I will be curious as to what she has to say. Curious and nervous.

Thanks all, for the info. Affected - I think that's exactly what's been tripping me up - I keep seeing references to limp muscles, and I didn't know if that is a place that everyone ends up at, or if it is different for everyone. That makes sense to me about your husband's experience versus...

Hi all, I have read this board everyday for four years, and there is something I'm still unclear on. I was hoping someone might be able to explain it to me here (for those of you who don't know me, I usually post on the PLS board. I have a UMN diagnosis of hereditary spastic paraplegia that...

Hi there, I read with your post with interest because I have similar symptoms and a similar lack of answers. I was diagnosed with HSP in 2014, but I have no family history, and my (quite extensive) genetic testing has thus far come back negative. I had similar presenting symptoms - spasticity...

Hi, I remember you. We had our major appointments in the same city on almost the same day. I remember being glad that nothing major showed up for you at the time. I was diagnosed with an upper motor neuron disorder at that time, but that has since been called into question, and I have spent...

I second the hiking sticks. I bought some good ones for a trip to New Mexico this summer. We went on what turned out to be a pretty strenuous hike, and I was able to drag myself through it by using my arm strength. I recently used them again on Halloween when I went trick or treating with my...

Ugh, I'm so sorry. I know all too well that, "wait, WHAT?!" feeling. After two years of coming to terms with "having" hereditary spastic paraplegia, it was quite the mindf*** to be told I didn't exhibit ANY signs of spasticity. It's interesting how similar our experiences and backgrounds...