temporary paralization

has anyone else experienced this? my oldest son is back in the hospital, again, this time he went unconcious and lost the ability to talk when he woke up. this is like the 4th time, most of the time he has had this type of episode a few days after a lot of exercise or exersion on his body. the first time it was just his feet, no feeling or sensation. then the next it went past his knees, then up to his waist. He did the warrior dash, very intense. but hey he's 18 can't tell him anything. 3 days later he has an attack and it is up past his chest and effecting his arms. It broke his heart because he can't go into the military. his dream since he was 2. but he was in denile about it. then he went to visit friends in Utah. and the day before he is suppose to return, he passes out and when he wakes up he can't talk or move. This time he wasn't doing anything physical. I know our bodies can say ok ive had enough, time to repair, especially if we over due it and do damage like small tears in the connective tissue. But has anyone else experienced anything like this?

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Oh my goodness, how scary! I've had numbness/tingling (it feels like a foot falling asleep) in both hands when i wake in the morning, but Dr's think it's from the position I sleep in and goes away within ~15min after waking and moving around. I will also have numbness if I sublux a joint, but once I get it back in position it goes away. I hope you find answers soon! Hugs

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I have woken up in a state of full body lockdown a few times. Never paralised in terms of feeling, but locked down so I can't walk or move my legs. This happened when I was younger and did way too much and then the next day this would happen. Luckily I had a fantastic osteopath at the time, and she would get everything moving again and I would walk out of her clinic like a totally new person. For me it was obviously mechanical, muscles and ligaments that decided enough was enough! Very scary though. One thing that helped me was to stop sleeping flat, so no more sleeping on my back. Sleeping on my side, almost in the recovery position, stops my spine from becoming rigid and now I can't sleep on my back at all or I seize up.

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This has happened to my 9 year old 3 times in the last year. The odd part is that 3 hours later she may be completely normal again. We have been to the er, pcp and home. The cardiologist finally stated that he believes there are extreme muscle spasms in their bodies that the body reacts with a severe panic attack and the paralysis sets in. This made more sense than she was faking it or it was in our minds. ( obviously I was enraged by these remarks). As we began to watch overuse and work on relaxation and pain management without drugs, things have Greatly improved. No episodes for 4 months. Not sure if this is the right track but it was a starting point. Don't underestimate their pain thresholds as pain is all they know.

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Does he have EDS? This is very serious and he should be checked out and scanned. A lot of times, the vascular system of people with any type of EDS loses its tone, and it can be difficult for the arteries and veins to constrict or dilate as needed. This can cause cases of temporary paralysis/numbness/tinging because of a loss of blood supply to a nerve. More seriously, however, it can be related to a stroke or ishemia of the brain blood vessels. You need to get him checked out. If nothing else, you have to tell him to take it easy. People with EDS have very fragile tissues, and need to give their bodies extra care to avoid serious consequences.

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Dr.Diana has talked about this happening with EDSers. Go to prettyill.com to see if you can find something there on her website. It must be terrifying! I'm so sorry. I don't remember the specifics, but this has happened to Dr. D herself. Please go to her website to find out more about it! Good luck!

Unhinged

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Just found this old discussion....


http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ do-you-feel-sicker-if-you-lie-on-your-back-have-you-ever-felt-paralyzed/

There were 149 replies to this discussion! I hope you can find some answers here!!!!

Unhinged

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I am sorry for your challenge and your son's experience. There are many illnesses which can have this manifestation. I will tell you my story.
When I was 24 years old I was working as a nurse on a neuro-rehabilitation floor. I did a lot of lifting pushing and pulling with repeated injury to my neck.
I started having episodes where I would go weak on one side usually my right but not always. I actually fell into my plate at a restraunt because of these experiences. One doctor thought they were migraines equivalents. Things did not improve and symptoms began to happen more frequently and were more severe. I never had any idea that what I was doing for a living was contributing to the very symptoms that I was experiencing. I will explain this further into this story.
December 20, 1994 after working a 12 hour shift, I started feeling really weak. I went to the nurse’s lounge and an electric shock went through my body from my toes to my neck and I was by all means unable to move from the neck down. I was a quad- quadraparesis is all limbs are weak. My right side was much weaker than my left.
I was taken transported to another hospital where my PCP worked out of in Maryland. I was diagnosed with transverse cervical myelitis, that means inflammation and of the spinal cord in the cervical spine. Usually these symptoms are thought to be related to MS, or other illnesses which attack the central nervous system, they can also be related to repeated injury to the area such as recurrent neck injuries from lifting heavy patients. Back in 1994, MS was the melting pot for unexplained neurologic challenges. I was 24 years old and I could not walk, feed myself and I could not lift my arms from the bed. I was told I had MS and I would be in a wheel chair for the rest of my life. I was an active, educated career woman.
This experience changed my life in many ways for the better. I went back to college and got a Bachelors degree in Nursing and yes I walked across the stage. I did recover. It took me 2 years to recover from.
I had spasticity, migraines, seizures, and migraine equivalents. The cause as I now understand of all of these symptoms was EDS. Even the large quadra paresis episode in 1994 had everything to do with the weakness caused by EDS and deffective collogen production.
My neurologist explained it this way. My joints are weak in every area of my body. I have scoliosis and EDS and I was working on a rehabilitation floor with people grabbing my neck and pulling on it. I injured it over and over again until it caused a spinal cord injury. I had EDS, a spinal cord injury and the migraines, neuropathy, proprioception and other symptoms were all related to EDS.
If your son has EDS or even if he does not, sports put anyone at risk for injury. His body is saying "something is wrong". It is screaming out that he needs to be evaluated by someone who knows EDS or a neurologist.
Had I known 20 years ago or even 40 years ago what I know now, I could have deflected or prevented some major injuries.
I know you must be very concerned and I would take him to someone who understands EDS even if it is miles away. I am by no means an expert but I am an expert patient. I am the person who did not understand what was happening. Being an educated woman and a scientist I wanted to know the how, the why and the what was the cause for my physical challenges. It took me 41 years to find the truth.
I was diagnosed with MS at 24 and then undiagnosed and mis diagnosed until I was 41. Now I do understand the how, why, what, where and the reason behind what happened to me then and what I experience now. I had these experiences of pain, weakness, migraines and eventual spinal cord injury because of EDS. I created more symptoms by repeated injury because of not knowing what the real problem was. It is also paramount that if he has EDS he go to a physical therapist trained in EDS patients. You may already know these things. Your son's experience sounds so much like mine.
I am grateful to my mother who stood beside me through it all. God Bless

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Just to add on to Sharon's story, this can happen without the injury necessary for "normals". The vertebrae of the spine, including the cervical vertabrae, are a joint like any other joint in our bodies and are thus prone to the same instability as any of our other joints. The difference is that in the spine, the vertebrae are in close proximity to vital nerves. So if a vertebra subluxes and happens to press upon a nerve or the spinal cord, neural symptoms will be experienced. When there is cervical instability, Physical Therapy with an EDS-savvy therapist is crucial, though many in our community also use different neck braces like the Aspen collar or have corrective surgery. Just so you know, the surgery which fuses vertebrae together is not generally a long term success as it just exerts more pressure to the vertebrae above and/or below causing them to become unstable.

If you don't have one already, you can ask on this forum for Physical Therapy recommendations in your area or check with a local support group if you have one. Just so you know, many members will only respond if the post is set to "shared with members" as they do not wish to have their replies visable to everyone with an internet connection.

Take care....

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Here is a good description of cervical instability: http://www.physio-pedia.com/Cervical_Instability

And here is a past discussion on this topic: https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion /cervical-instability-breathing-swallowing-speaking/

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