My 17 y/o daughters life was changed in 24 hours. She is having severe spasms in her low back moving into legs & arms. Looks like a violent seizure. She can communicate and take commands during episodes. Looks & sounds like dystonia. Nothing has happened to bring this on. She now walks like she has polio. She was a normal active cheerleader and dancer. Our DR is saying it's anxiety. I think it it more than that. We hit the ER 2 days in a row via ambulance. It is that bad. 5 days in hospital. She's out b/c every test they have run has come out negative. She is still having them. Has complained of low back pain for sometime now. She no longer has control of her own body. It is in control. There are no parallels to when and how they happen. They can last from 4 to 40 minutes. She has had as many as 30 in one day. She screams out in pain while she is twisting into unfamiliar positions. Please help us figure this out. Thand you
Please Mom, somehow, someway, get this child to a GOOD neurologist. Keep going to neurologists, until someone tells you what this is. Don't accept "anxiety" as an answer.
MRI's, CAT scans, blood work, EMG's, EEG's, should all be part of this child's examination. Do not accept less than a diagnosis, and some answers. You will be glad you pursued a medical answer for your daughter. I would be remiss if I did not mention the power of prayer. Even if not "religious", ask our Good God (Jesus) to help. Do not stop asking, until she is better.
My 16 y/o daughter is experiencing many of the very same symptoms. Has been 6 months. No specific physical event to explain. Was active in field hockey. Was near but not directly related to a stressful event. Never taken birth control. Has been seeing neurologist and pain team with physical therapy, pschycology, accupuncture and medical monitoring. Currently on lyrica, cymbalta and flexril. Not 100% but managaging for most quality of life.
Hello there. I am SO sorry to hear about what is happening to your daughters Robrich and Larryweich - it is absolutely frightful. It does NOT sound anything like anxiety Robrich, grrr! I know because, if it is the same illness as mine, it happened to me too. One time I was carried into ER, body writhing, blood coming from my mouth and a pulse of 140 and dismissively they said I must be having a panic attack. I don't think so. I was 20 years old and, also, there seemed to be no obvious precursor. After a year or so I was diagnosed with Paroxysmal Dystonia (or PD/PNKD) by a top Neurologist. I was very fortunate. Once I was started on Topirimate (Topamax), the attacks began to taper off. It had got to the stage where I was experiencing 3 severe attacks a day; each attack would last for 2 hours or so and would leave me listless and terrified as I never knew when another would happen. It was the most painful experience of my life: my feet would turn inward and could not be moved by two grown men, then then stone-like spell would spread upward through my legs. My eyes would roll into the top of my head and stay there and my head would fix as far back as it could go. But the worst was my jaw: it would twist sideways, almost dislocating itself, my teeth shredding apart the inside of my mouth until it bled. I had to have my four wisdom teeth removed.
I have been on Topamax for 6 years now (200mg a day) and now only experience a tightness in my left foot/leg, which was perviously a warning symptom before an attack. But it still scares me.
Currently, through my neuro., I have been gradually adding in a new anti-seizure med called Lamotrigine until reaching 200mg; and will now very gradually begin to reduce the Topamax which is terrifying! Topamax is known to cause birth defects so one is not advised to begin a family on this drug. Lamotrigine is a slightly safer bet. I cross my fingers, hope and pray that Lamotrigine will keep me as safe as Topamax has.
And I hope that your daughters find the best in specialists and medicines, as I did, in order to reach the quality of life that Topamax gave me.
I know I am coming very late to this discussion - over 2 years in fact. Has your neurologist tested your GAD antibiodies looking for the possibilities of Stiff Person Syndrom? It is extremely rare, and most of its symptoms are described by other diseaes.
If diabetes, spacial anxiety or panic atacks, rigidity in the lawer back and extremeties, other autoimmune disorders, or extremely severe muscle spasms anywhere and everywhere in the body accompanied by what seems an inordinate amount of pain beyond basic charile-horsing.
It is unlikely, but possible. Because it is so unlikely, it is very often not checked for.
Anyway - I pray your daughter's conditions and your own are being controlled and understood by this point.
my 17 year old daughter is doing this as well. we live in los angeles ca, all the doctors are saying she has psydosiezures. that is not what she has. they are extreme convulsions looks to me as a seizure but have ran all the text so they are saying it is not. Has anyone found the cure or reason for this yet?? please let us know/
I am 33 and have been experiencing these same things for about 2 years now. It has taken a severe toll on me mentally and physically. I was told possible MS but I am cuurently seeing a great neurologist that specializes in movement disorders. As stated by someone earlier I am told I have pnkd. I am on Valium and Baclofen and they have been helping for awhile. I am actual having an episode or whatever it is called and the medicine isn't doing the trick at the moment. It takes the edge off but that's it. I hope this helps.
That is exactly what my son is on and it is barely taking the edge off of the pain. And his neurologist is clueless to what to do next. They ran MS test and that came back negative, and insist its not any form of dystonia. Two things though, and I don't know if these things are related, right after his epideral steroid injection he started having these severe whole body spasms, and he was also forced to get a flue shot by his school to attend, but right afterwards he started having a bad reaction and breathing problems as well as more back pain which forced him to go to home schooling.
Robrich34 did you ever get a diognsosis? My 18 year old son has been having all the same symptoms. Many ER visits and ambulance rides. Has been out of school for a year and a half. Graduated but now can't work of go to college. He has severe pain in his back ratiating down his leg and arm mostly on the left side. It's gotten progressively worst and his spasms scare all of us because they look like seizures. He often screams in pain! The neurologist has run every test possible and they all come back negative. She too has suggested he is depressed! BS! He's frustrated because they can't help him or figure out what is wrong with him, and the pain ALL DAY LONG is also frustrating! He's been on every med they have and nothing has helped. Now at our last visit she suggested that he might have been molested by me or my husband and we should leave the room so he can tell her about it! What the H-E-DOUBLE L? Really is that it? She has given up, can't cure him or come up with a diagnosis so she points the finger at us, and what is worst at my son insisting he is suffering from depression! He broke his back two years ago, had a back brace, an epideral steroid injection, and it still has gotten progressively worst. We are at our wits end!
My son has had MRI's of his back, head, and pelvic area. CT scans, x-rays, back brace, epideral steroid injection, which seemed to make it worse, two series of physical therapy, the first lasted a few months then he was back to where he started, and again, but it has done nothing, it on last about a couple of hours at the most, he has seen back specialist, a neurologist, and has had blood work, he has been tested for MS and they have tried every med on him. NOTHING has helped! They say it's not dystonia or any of the muscle diseases such as MS, lupas, Parkinson's, etc... But his life is still at a stand still, 18 years old and can't go to school or work, drive or go any where without taking his meds with him, and even with the meds can go into severe painful "non epileptic seizures", well that's what his neurologist called them. How can there be so many young people here with all the same symptoms yet there is no one who knows what this is?
I have been having severe leg cramps at night for about 9 months now. They started shortly after receiving a steroid injection in my hip for bursitis. My dr has run a number of tests on me but found nothing wrong. She has prescribed various medicines with absolutely no effect. these leg cramps are similar to charlie horses but are much more severe and often times happen in the ankles. My feet will be pulled up & out and sometimes have turned purple. The pain is unbelievable. For the past 9 months the cramps have happened only during the night, but very recently they began happening during the day. For nighttime relief the only thing I have found that helps is marijuana. I am to the point that I am terrified to go to sleep unless I've smoked first. I would really like to know what's causing them and how to make them stop!