barnes jewish hospital in st. louis is where I go and I'm on valium, bacflin and treatments every month. Dr.'s in neurology is the ones that takes care of this. they have me on a regular time to take my medicine all day long and that helps. The treatments some months I have good months and others it may take 1 to 2 weeks to get in before I start having a good rest of the month. the treatments are IGIV I have had only 1 bad reaction 1 weak
my Mother has Dystonia and she has more involuntary movement like you do, the sun light is one of her main triggers, I myself have found that when she has a spell, I rub her pressure points in her neck and it seems to go away alot quicker than if you just let her spasm! I am very truely sorry that you are having to go through this as well as for my Mother! I know it is hard on your body and it gets in your way at times, cause it does for my mom, chin up and maybe they will find a cure soon!
My Mother has Dystonia and her symptoms are more like his, her eye lids jump, she cant talk, she cant walk, she cant do anything, sometimes it is like she can't breath and she is gasping for air, one thing I have found that seems to help it, is massage the pressure points in the neck on each side along the hair line, and it seems to go away alot quicker than if you leave her a lone and let her spasm!
My Mother has dystonia and her symptoms are more like his, her eye lids jump, she cant talk, she cant walk, she cant do anything, one thing I have found that seems to help it is massage the pressure points in the neck on each side along the hair line, and it seems to go away alot quicker than if you leave her a lone and let her spasm!
thankyou so much for sharing this with everyone. You are a very brave person. This is so important for people to be able to understand this condition. my thoughts and best wishes are with you. thank you liz
at about 1:53 of this video, I've seen my boyfriend do something similar to this. He'll grab the counter, the sink, the washer...whatever is near and sometimes the jerking is more pronounced than other times but his face will always have a grimace on it. He's experienced seizures before but I don't know if that is what he is experiencing when he does this kind of stuff. How does this compare to a seizure disorder? What is myoclonus exactly? God Bless this man.
Thank you for sharing this video. I have a neurological disorder yet to be diagnosed. SPS has been mention. I see similarities although I think you be more progressed than me. I would be interested in joining a site for PSP. I truly empathize with you. You are a very brave man.
my mother,who is 67 had sps.. she was diagnosed in 2002 and takes 6 diazepam a day in order to walk... and function... she's a wonderful woman, and we all love her very much. This disorder is very serious... it is rare, but there needs to be more research done... thanks for posting........god be with you
Thanks for the strength to post this, I am part of a SPS support group on Facebook. I will post your video, and hopefully you will join us. Hang in there.
Me parece increible tu fuerza. Es el primer video aquí que encuentro de nuestra enfermedad. No estas solo y entre todos lucharemos por conseguir mejoras. Animo y un abrazo.
I am spanish girl with stiff person syndrome. Sorry because my english is very bad. We have a web, and in England a Deuchland too. In England are in contact 200 afects for this patology. Michael you aren't alone. Best regards.
I have a friend who has Lance Adams Myoclonus(the worst form). He is on many of the same meds but is doing much better. It has been 2 years and he has improved so much....he at times, can walk with walker and goes to the gym to swim a few times a week. Walking and swimming in has been the most beneficial. You need to keep up the strength and balance.
I hope your husband is doing better. My prayers are with you.
Hi! i live in argentina and my mom diagnostic is spinal myoclonus. she was in the hospital for 2 days and had a lumbar puncture and all kind of studies about what she have. The diagnostic is Propio Spinal Myoclonus and she has ato take clonazepan. she was with mioclonias for 17 hours non stop. if you can share with me your experience i will be very grateful with you so i can help my mother. do you know if theres is a center in usa that is the best to care this illness? thank you.
I am sorry to hear about your mother going through this. We have wonderful doctors here for Mike. Many people try to go to the Mayo clinic here in the U.S.A. but we can not afford that ourselves... I wish you the best of luck and the med your mom is on is one of the same as Mike...he is on many different ones....
I am sorry that you have any form of this at all... do you have a formal diagnosis with a name? My husband says he will keep a thought of you in his prayers... Valerie and Mike
Thank you for taking the time sharing your experience. It can't have been easy for you to have exposed yourself like this, but I know that there will be others who will be helped by seeing that they are not alone. I hope that the doctors can fine a way of relieving your suffering. Best wishe. Paul
HI, I am the lady talking in this video. This is my husband Michael and we are looking for more answers to help him. He has many wonderful doctors-- a geneticist, neuroscientist,neurologist, endochronologist, psychiatrist, psychologists, neuromuscular doctors..the list is long. He takes klonopin, ativan, keppra, zanaflex, baclofen, zoloft , valuim, plus more.. a 1000 pills every month now. without these he would be in a padded bed full time and on his bipap machine or worse.
Hace mucho que intento comunicarme con vosotros, pero no me deja mandar el mensaje. Espero que este llegue. Soy otra afectada y quiero mandaros un abrazo muy fuerte. No estás solo.
@WrightNightmare He doesn't need all those doctors and meds. I would get to Barnes jEWSISH HOspital in St. Louis Mo. or to Mayo. They have come out with so much ways according to his body and treatments look above and you will see what I have to say. It has helped me a lot. I know will just jump to loud noise or small spasm that I can stop myself by putting my feet firmly on the ground and sitting straight up in my wheel chair or chair.
barnes jewish hospital in st. louis is where I go and I'm on valium, bacflin and treatments every month. Dr.'s in neurology is the ones that takes care of this. they have me on a regular time to take my medicine all day long and that helps. The treatments some months I have good months and others it may take 1 to 2 weeks to get in before I start having a good rest of the month. the treatments are IGIV I have had only 1 bad reaction 1 weak
DynoMama1 5 months ago
My husband's Mother had this and it broke her hips. The only thing that helped her is valuim.
DNALINDSEY 9 months ago
@DNALINDSEY Yes, Valium works wonders with helping this....
WrightNightmare 9 months ago
I have SPS and I went to Barnes Jewish Hospital in St. Louis and they gave me IVIG that helps. Do you take valium?
DynoMama1 1 year ago
@DynoMama1 Yes...he has to take valium plus 23 other meds actually
WrightNightmare 9 months ago
god bless<3
jaclynnnnnnnnnnn 1 year ago
diseases are horrible, This makes me scared and sad. I wish you the best of luck.
JonathanJGuevara 1 year ago
dont you better want to lie down / sit if you have got the spasms?
lhohneklab 1 year ago
my Mother has Dystonia and she has more involuntary movement like you do, the sun light is one of her main triggers, I myself have found that when she has a spell, I rub her pressure points in her neck and it seems to go away alot quicker than if you just let her spasm! I am very truely sorry that you are having to go through this as well as for my Mother! I know it is hard on your body and it gets in your way at times, cause it does for my mom, chin up and maybe they will find a cure soon!
TheKimsharp 1 year ago
My Mother has Dystonia and her symptoms are more like his, her eye lids jump, she cant talk, she cant walk, she cant do anything, sometimes it is like she can't breath and she is gasping for air, one thing I have found that seems to help it, is massage the pressure points in the neck on each side along the hair line, and it seems to go away alot quicker than if you leave her a lone and let her spasm!
TheKimsharp 1 year ago
My Mother has dystonia and her symptoms are more like his, her eye lids jump, she cant talk, she cant walk, she cant do anything, one thing I have found that seems to help it is massage the pressure points in the neck on each side along the hair line, and it seems to go away alot quicker than if you leave her a lone and let her spasm!
TheKimsharp 1 year ago
I'm so sorry you have to live with such a disease. I hope your story will help motivate doctors to find a solution to this.
swimmersuga 1 year ago
thankyou so much for sharing this with everyone. You are a very brave person. This is so important for people to be able to understand this condition. my thoughts and best wishes are with you. thank you liz
neomilly 1 year ago
You are a brave man. I am sorry for your suffering. Stay strong strong. God love you even through your trials.
mcjkee 1 year ago
Need to test for Lyme disease through IgeneX. I have myoclonus and it's caused by chronic late stage Lyme and coinfections.
LedByTheLamb 2 years ago
His doctor told me that he has much more than lyme disease. I am sorry that you are ill with it though.. thank you for your post.. Val
WrightNightmare 2 years ago
at about 1:53 of this video, I've seen my boyfriend do something similar to this. He'll grab the counter, the sink, the washer...whatever is near and sometimes the jerking is more pronounced than other times but his face will always have a grimace on it. He's experienced seizures before but I don't know if that is what he is experiencing when he does this kind of stuff. How does this compare to a seizure disorder? What is myoclonus exactly? God Bless this man.
geni4 2 years ago
Hi , Myoclonus is a symptom of another neuro illness usually. Mikes are not seisures. Myoclonus means jerky muscle... take care .. Val
WrightNightmare 2 years ago
God bless him. He is a brave man. What a horrible disease. My family fears that our 72 year old mother suffers from the same condition.
sean11ryan 2 years ago
I'm sorry but he reminds me of the laughing police-man, I know it's not a good time to joke......
keenandwhat009 2 years ago
poor barsted.... all the best, I feel for ya man
Dancanmurphy 2 years ago
Thank you for sharing this video. I have a neurological disorder yet to be diagnosed. SPS has been mention. I see similarities although I think you be more progressed than me. I would be interested in joining a site for PSP. I truly empathize with you. You are a very brave man.
lindadarbyfiset 2 years ago
Same to you and your Mom.. My husband is on 22 meds a day now. Sadly, he suffers greatly.
WrightNightmare 2 years ago
my mother,who is 67 had sps.. she was diagnosed in 2002 and takes 6 diazepam a day in order to walk... and function... she's a wonderful woman, and we all love her very much. This disorder is very serious... it is rare, but there needs to be more research done... thanks for posting........god be with you
getoutofmyway01 2 years ago
Hi, Angelina here, I am watching this video over and over as his contracting muscle spasms are so much like mine.
I have found many others online seeking help, and brave enough to put up videos.
You are wonderful. Hope to talk to you at
our SPS site soon. I am working on our
survey for the medical comm. Do the dogggies know when he is starting to spasm, my kitty always knows.
PS loud music, even that we like can
set off tremors. Hang in there, Ciao.
AngelinaNYC 2 years ago
Thank you for posting this.
embersidhe 2 years ago
Thanks for the strength to post this, I am part of a SPS support group on Facebook. I will post your video, and hopefully you will join us. Hang in there.
We do care!
AngelinaNYC 2 years ago 2
I think that would be nice for my husband to be able to join you... how do I set that up for him?
WrightNightmare 2 years ago
thank you for posting this video i have myoclonic epilepsy too
alonitzafoni 3 years ago
MAOI therapy...............it might save your life, good luck.
blackcompe 3 years ago
Me parece increible tu fuerza. Es el primer video aquí que encuentro de nuestra enfermedad. No estas solo y entre todos lucharemos por conseguir mejoras. Animo y un abrazo.
monica2576 3 years ago
Hi!
I am spanish girl with stiff person syndrome. Sorry because my english is very bad. We have a web, and in England a Deuchland too. In England are in contact 200 afects for this patology. Michael you aren't alone. Best regards.
Mostiffman 3 years ago
I have a friend who has Lance Adams Myoclonus(the worst form). He is on many of the same meds but is doing much better. It has been 2 years and he has improved so much....he at times, can walk with walker and goes to the gym to swim a few times a week. Walking and swimming in has been the most beneficial. You need to keep up the strength and balance.
I hope your husband is doing better. My prayers are with you.
GoHara1 3 years ago
Hi! i live in argentina and my mom diagnostic is spinal myoclonus. she was in the hospital for 2 days and had a lumbar puncture and all kind of studies about what she have. The diagnostic is Propio Spinal Myoclonus and she has ato take clonazepan. she was with mioclonias for 17 hours non stop. if you can share with me your experience i will be very grateful with you so i can help my mother. do you know if theres is a center in usa that is the best to care this illness? thank you.
darthgon 3 years ago
HI,
I am sorry to hear about your mother going through this. We have wonderful doctors here for Mike. Many people try to go to the Mayo clinic here in the U.S.A. but we can not afford that ourselves... I wish you the best of luck and the med your mom is on is one of the same as Mike...he is on many different ones....
WrightNightmare 3 years ago
Thank you very much!!!!
darthgon 3 years ago
Hey, whats up, I have a much milder form of this, but i know how damn frustrating it is. Hang in there, man.
ultimate0death 3 years ago
I am sorry that you have any form of this at all... do you have a formal diagnosis with a name? My husband says he will keep a thought of you in his prayers... Valerie and Mike
WrightNightmare 3 years ago
wow thanks a lot you guys are very nice.
Its Juvenile Myoclonic Epliepsy.....I have a milder form of those twitches.....
Thanks for your concern, I will pray for you guys as well.
ultimate0death 3 years ago
Thank you for taking the time sharing your experience. It can't have been easy for you to have exposed yourself like this, but I know that there will be others who will be helped by seeing that they are not alone. I hope that the doctors can fine a way of relieving your suffering. Best wishe. Paul
kaazoom 3 years ago
HI, I am the lady talking in this video. This is my husband Michael and we are looking for more answers to help him. He has many wonderful doctors-- a geneticist, neuroscientist,neurologist, endochronologist, psychiatrist, psychologists, neuromuscular doctors..the list is long. He takes klonopin, ativan, keppra, zanaflex, baclofen, zoloft , valuim, plus more.. a 1000 pills every month now. without these he would be in a padded bed full time and on his bipap machine or worse.
Answers anyone?
WrightNightmare 3 years ago
Hace mucho que intento comunicarme con vosotros, pero no me deja mandar el mensaje. Espero que este llegue. Soy otra afectada y quiero mandaros un abrazo muy fuerte. No estás solo.
monica2576 3 years ago
@WrightNightmare He doesn't need all those doctors and meds. I would get to Barnes jEWSISH HOspital in St. Louis Mo. or to Mayo. They have come out with so much ways according to his body and treatments look above and you will see what I have to say. It has helped me a lot. I know will just jump to loud noise or small spasm that I can stop myself by putting my feet firmly on the ground and sitting straight up in my wheel chair or chair.
DynoMama1 5 months ago