I am having debilitating spasms they make me SCREAM unexpectedly from the extreme pain of a spasm in my ribs, chest, back, My legs and arms have tics constantly and sometimes spasms too. I need to know if this is stiff person syndrome by comparing symptoms. Please help me with my search for health and well being.
G'day Screamer
Your description of symptoms sounds the same as mine
After many months of being told there was nothing wrong & see psychiatrist I was diagnosed with Isaac's Syndrome/ Neuromytonia.
I understand with SPS the spasms, jerks, tic happen during the day and then stop during sleep
With Isaac's they continue during the night often causing night sweats
There are many of us on the Nord Rare Diseases site with Isaac's - just do a quick search
I wish you a quick diagnosis and relief during this difficult time
Rick from Sydney Downunder
they dont wake me up usually they stop but I hav rem sleep almost immediately and wake easily. they get worse as the day goes on but they start as soon as I awake. So you scream too? It is startling. thank you for your reply. I will look at the diagnosis you have. I do pretty well with valium right now but a lot of it. I am already on the right meds for it so that is good.
I looked it up and I dont have the hallmarks for that disease. I don't wake up with them. I dont fall down like sps though either. At this point I feel like it is up to me to figure out what is wrong and test for it. How did you get diagnosed?
my name is jennifer thanks so much for your reply. I had family in Australia when I was young my aunt would bring me things from there. Sydney looks like a lot of fun!
jennifer
you can find out if it is sps by having a test ran would like to add i have it but do not fall down. thing it is later down the road. everyone starts out a little dofferent but all end up at the same station.
iS THE GAD OR GABA ANTIBODIES TEST THE ONE YOU ARE TALKING ABOUT? THEY SAID I WAS A 1 AND I AM GOING TO REPEAT IT TO BE SURE. THERE IS A NERVE TEST I AM SCHEDULED FOR ALSO. WHAT ABOUT YOU DO YOU SCREAM OUT IN PAIN FROM THE SPASMS? WHERE DO YOU HAVE THEM BECAUSE MINE ARE IN MY CHEST AND BACK AND RIBS MORE THAN MY LIMBS. THANKS FOR YOUR HELP.
JENI
I was reading the discussions, my spasms are mostly in my upper legs but sometimes they are in my arms. Mine don't hurt and I have SPS. I hope they find out what you have soon because it sounds like you are in a lot of pain.
Tricia
My wife was diagnosed with Breast Cancer and SPS last year. She is unable to walk independently. She is currently on Bacolfen, Diazepam and IVIG treatments.
Does anyone know how long it takes before you notice significant improvement with IVIG's?
Also, we live in New Jersey and would like to talk to another sps diagnosed person.
I got most immediate relief with diazepam (valium) within an hour of the diagnosis and first pill, I was feeling MUCH better. I go to Dr. Beth Murinson at Hopkins in Baltmore. I had my appointment with Dr. Murinson today - she is sharp. She detected some stiffness in my walking as we went to her exam room, but didn't let on at first. She had a 3rd yr med student trailing her today, so he did an interview with me while she finished with her other patient. Then she returned and we talked about meds an how she had noticed my stiffness during the walk. She still thinks the diaz is best for my status today, but wrote an Rx for some 5 mg tabs that I could take when going into situations where some kind of stress (even standing a lot at a party) might make me tighten up. She didn't bring up ivig - wanted to keep things simple. She did recommend a PT who she has sent many patients to, who has all sorts of tricks to teach. That will be interesting.
Steve
HELLO EVERYONE... MY GAD CAME BACK NEGATIVE BUT STILL I HAVE THE SAME SYMPTOMS OF STIFFNESS IN MY UPPER LEGS AND PAIN IN MY LOWER BACK. I ALSO GET REALLY STIFFNECK ALL THE TIME. IF IM STANDING UP MORE THAN 15 MIN. I HAVE TO START LEANING FOWARD OR BACK SINCE EVERYTHING STARTS TO TIGHTEN UP. I WENT TO MY NEUROLOGIST AND HE STARTED ME WITH LYRICA I HAVE A MILD RELEIVE BUT IT MAKES ME FEEL A LITTLE STRANGE IN THE HEAD. IM ALSO SCHEDULED FOR AN IVIG. DID ANYONE GET A NORMAL GAD AND STILL GOT DIOGNOZED WITH SPS?
Yes. My wife's tested negative and she has SPS. Most of her stiffness is in her tunk and both her ankles/feet fold in and she uses AFO's and a walker to help her walk. She is unable to walk independently at this time.
Hi RT,
I have ivig treatments and it takes a while for it to kick in. usually it is done in rounds of 6 months. two days a month. It seems that when I started it took about the 4th month before I noticed a difference.Make sure she stays well hydrated by drinking plenty water before and after treatment. This will help the headache. Make sure the medicine is room temperature and that it is not infused too fast. It takes 7 to 8 hours for my infusions. I hope it works for her. if you need any more info., if i can help let me know.
Take care and GOD Bless you.
Shirley :-)
Shirley,
Thanks. My wife is currently on two days a month 35g which take about 2 1/2 hours. What type of SPS do you have and what medications are you on? I
Do you believe in alternative medicine? I know of herbal products which did wonders to patients who already lost hope. Many testimonies have been made by people who have recovered from dreaded diseases like this. You have nothing to lose by trying this.
Thank you all for answering my questions. I haven't writen in a few days I haven't been doing to good. I seem to be sleeping a lot and my days are just going by me. I havent been to bad in my legs lately but, I have been pretty stiff around my neck. It seems that everyday is a different thing. It is so hard to wake up in the morning because you never know whats going to be hurting next. Im glad I have you guys to talk to cause no one in my family seems to want to. I know that its really hard for them or they just dont want to acknowledge that this deseace is real.
nena
Hello everyone, I hope everyone is doing well. I havent been writing for a while but, I'm back. I'm trying to get my insurance to cover my ivig but they dont seem to want to, so I have appealed it and Im waiting for an aswer. I guess it takes about 30 days to get it. Have any of you had to go through these problem? Meanwhile while I'm waiting I have seem to have gotten worse in the sence of not being able to go out of the house too much or do anything cause I'm always seem to be cramping up and getting pain on my legs and lower back. My neck now is getting worse and I've also noticed my feet around my anckles and upper feet are hurting a lot. My doctor has me in Lyrica and Ultracet it seems to be gettin the edge of the pain for a little while but it comes back again about 3 to 4 hours later and somedays it dosent even work. Are any of you taking any of these medications? Do any of you feel pain and pulling sanesation in your legs and feet? I'm going nuts with this....
thanks guys
ngm
Nena,
There is a program called "GAMMASSIST" That may help with getting your IVIG treatments covered. Good Luck!
Robert
Hi. I did take shots fo Igg and I got horrible nausea and the worst migraines ever. They did not significantly help me after a aseries of 12 shots every 2 weeks.
hi. Your family has the disease with you. They experience it differently but are also affected. My grown kids cant stand to talk about doctors medicine or pain. Its hard. You want to express it to someone who knows what you are feeling. I am going to the alternative world with my treatments and keeping my medicines going. I can say that there is a cool thing I have tried that gives me relief. Its a device that has glasses and earphones and it puts your brain into alpha which makes you just feel good. It does not last you just get breaks. It is so worth it. I reallly notice a difference.
I had a gad that was negative and I have started to fall down and not be able to walk. Now we are looking at lymes disease. I did not know you could have it be neg and still have the disease!
Screamer...
I'm sorry you're not feeling better. My doctor did say you could have a neg gad and still have it. I wonder myself if tha'ts true also since I've had a lot of misdiagnosis. I'm willing to try the Ivig just for the simple reason of I'm just dying to have anything that will make me feel better, at least for a little while.
I was also checked for lime and lupus and tons of other deceases a few years back but everything came out ok. They did diognose with ms like four years ago but I went to the ms clinic in usc and they said I didn't have it. I had already started the treatments and everything. Shots everyday, but you never know. Some of these doctors just don't know, and that's what worries me, that they might be mistaken again. I hope you get your right diognosis and let me know how everything continues with you.
take care
ngm
california
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