posted
I would like to know what medications other people are using. My doctor wants me to go to physical therapy to strengthen my legs, but I have found that the more muscle tone that I have the more spasms that I have. What are your thoughts on that? I use Zanaflex at night, but my legs are still kicking the life out of my poor husband all night long. I would like to find contact with others with this annoying problem. PA IceDrop@aol.com
posted
Take a look at the "support groups" post. Ziggy has a link to a website where posters with the same condition as you could help you out.
Posts: | Registered: Jan 2005
| IP: Logged
posted
Hi, This is my first time on the line, and I couldn't agree with you more. For years I went through therapy trying to stay loose (home exercises, at the gym exercises, streching, all to no avail. After a period I stopped, I would go only so long and find they did no good. They actually made me worse, not to mention I couldn't build any tone in my legs. It was a hard decision, but I finally gave in to medication. I am now taking 15mg/day Methadone(5years) for pain and Chrones, Valium 6mg/day (3years) for spasticity,Tizanidine 8mg/day (4years) for spasticity, Qualaquin 324mg (4years) at bedtime for cramps. Still don't sleep long, but my wife isn't losing as much sleep as she used to.
posted
Hello, this is my first time on. I spastic paraplegia,or hereditary... My neuro has me on 5mg of Valium 3 times a day. What has worked for me is taking 1/2 tab once a day in am and early afternoon, then at night 1 take 2 5mg. It seems to help me sleep better and not want to straighten out everytime I rollover. I also do streching and floor exercises. I would like to see more improvement, but I have also had this since 2000. I am still having a hard time figuring out where or how this came from.The only thing that keeps me going is to say everyday "It could be worse" Janisse Gass
Posts: 4 | From: Cary,NC | Registered: Mar 2009
| IP: Logged
posted
Hi, this is the first time I visit this forum. I'm a student of physcial therapy, and I last week, during my practice time in a clinic, I started treating a joung patient with spastic paraplegia. It is my first experience with a case like this. I have just read your coments regarding strengthening exercises, but what about massage and stretches, either active or passive given by the therapist? I would really appreciate if somebody would share their experiences with this type of treatment
Posts: 1 | From: ireland | Registered: Mar 2010
| IP: Logged
posted
Hi Calima, I am 50years old and have had hot water therary,massages, physical therary. chriopractic care. It is all helped, but for only a short duration. My husband helps me with stretches. He stands up and pushes my legs while straight up in the air and forces my legs straight towards me. He also manipulates my paraformos(sp) and hip flexors.If he does it everyday it helps, but thats not always possible. I try to take my own stretching to the max, toe touching, leg lifts with assistance with my walker, heat sometimes works especially when it is cold outside.. Good Luck in you new job and keep stretching your patients, Janisse
Posts: 4 | From: Cary,NC | Registered: Mar 2009
| IP: Logged
posted
Hello, this is my first time too, but definitely an interesting discussion. After many years of hearing "you have cp, chiari malformation... Etc" I was finally officially diagnosed with HSP. For 7 years(when they thought it was CP) I have been using a baclofen pump, a HUGE disappointment and also for awhile had gotten shots of botox in my legs, weakening them even further. After years of falling & popping back up injury free, I am now beginning to injure myself rather frequently. I work out religiously to see if my dying leg muscles will strengthen, with results of just a mere hour of some relief. I've gone to PT, but have not found it beneficial. I've used a walker, arm crutches and AFO's and still find myself on the ground frequently. Am I unhappy? No way, I am truly grateful that I can walk and have myself and great people around me to be helpful and supportive when I need them. I have done some recent studies on stem cell research and they really appear to be breaking some ground on helping we the HSP family. I know we are all not in favor of this research as it seems rather cruel in some ways. But take a look and do some research, it appears we are only a few years away from possibly a cure or at least a better style of life.. GOD bless all of you. I'm fighting the good fight with you. Hopefully some day soon we can all speak of our triumph over HSP...
Posts: 2 | From: Green Bay, WI | Registered: Mar 2010
| IP: Logged
posted
Hello, this is my first time too, but definitely an interesting discussion. After many years of hearing "you have cp, chiari malformation... Etc" I was finally officially diagnosed with HSP. For 7 years(when they thought it was CP) I have been using a baclofen pump, a HUGE disappointment and also for awhile had gotten shots of botox in my legs, weakening them even further. After years of falling & popping back up injury free, I am now beginning to injure myself rather frequently. I work out religiously to see if my dying leg muscles will strengthen, with results of just a mere hour of some relief. I've gone to PT, but have not found it beneficial. I've used a walker, arm crutches and AFO's and still find myself on the ground frequently. Am I unhappy? No way, I am truly grateful that I can walk and have myself and great people around me to be helpful and supportive when I need them. I have done some recent studies on stem cell research and they really appear to be breaking some ground on helping we the HSP family. I know we are all not in favor of this research as it seems rather cruel in some ways. But take a look and do some research, it appears we are only a few years away from possibly a cure or at least a better style of life.. GOD bless all of you. I'm fighting the good fight with you. Hopefully some day soon we can all speak of our triumph over HSP...
Posts: 2 | From: Green Bay, WI | Registered: Mar 2010
| IP: Logged
posted
Hi! I think I finally found the right place to go here. Been here for a few months and everyone is great. Recently, at night my legs always spasmed but now I have this very, very painful ohhh, Bfff, call it tendon pull spasm. I swear I could sprain or break my ankle if I don't get up right away.It actually TURNS my ankle and foot to the side. I take my hand/arm which is strong and my foot over powers the spasm. It is NOT muscle like a charlie horse but the tendon. Hurts like heck. Anyone else? Thanks. Shila
Posts: 26 | From: WI. | Registered: Dec 2009
| IP: Logged
posted
Lately I've found that plain old tonic water (Quinine) is taking away the aches and helping with the spasms. I also found that Carbidopa/Levo 25/100 at bedtime helps when things get real bad.
Good luck,
John S.
Posts: 7 | From: Massachusetts | Registered: Jan 2008
| IP: Logged
posted
Hi, This is my first time here as I have just been diagnosed with HSP complicated after 15y of hell as I was first diagnosed with possible MS in 1996, I now have to go back and see my GP about changing my meds. as I can tell from your discusion here there is a wide variation to what medications there are that people are useing, but I am hoping that my GP has some idea what to start with. I am now in a wheelchair and have been for a long while with no hope of getting out of it as I have extensive damage to the spinal cord. But hopfully now that I have been properly diagnosed I might get some relef and with the help of this descution an idea of the meds to help my GP.
Eugene.
Posts: 1 | From: Australia | Registered: Aug 2010
| IP: Logged
posted
I am 52 yrs. old and have complicated HSP. It is not inherited so must be a mutated gene. I'm interested in hearing about experiences with botox. Or any medication that actually works to improve walking ability.
Posts: 1 | Registered: Aug 2010
| IP: Logged
posted
Physical Therapy has helped me walk again with various exercises and the use of Baclofen but I feel the medication is of little use compared to the Physcial therapy. There is allot of sedation involved.
Posts: 3 | From: Portland, Oregon | Registered: Jun 2010
| IP: Logged
Printer-friendly view of this topic