Severe Muscle Spasms/Convulsions

The past several weeks I've been experiencing a completely new level of muscle spasms in both my hip and shoulder. Typically, the spasms are more of a twitching or quivering. Lately, they have become what I would consider a convulsion. They are so extreme, my muscles violently tighten and jerk causing continual subluxing of my shoulder and hip. It occurs non-stop, every second for at least an hour to two hours before I see relief. I've tried the usual suspects: ice, heat, NSAIDS, TENS, and most recently my doctor prescribed muscle relaxers. I've tried flexeril, baclofen, and one other I can't remember, but nothing seems to work. It becomes some of the most intense pain I feel and am curious if anyone else has experienced similar situations and if anyone has any suggestions for possible relief or medications that maybe have worked for you.

All my best to everyone,
Jason

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My son has used Artane, a Parkinson medication. These went away after Chiari, upper cervical stabilization, and tethered cord surgeries.

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I would suggest looking into Dystonia. http://www.nlm.nih.gov/medlineplus/dystonia.html
The research I have done trying to figure out why I have localized tremors lead me here. I am going to see a neurologist about mine, but your description is closer than mine. I found a few studies that are reviewing if there is a correlation between EDSers and Dystonia. Sarcastically I want to say, of course it is correlated, it makes life that much more "adventurous" it must be correlated to EDS. But that is just me being sarcastic and bitter. Please look into it though and good luck.

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thanks! I never really thought about that before

-Jason

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Thanks for the link! I will most certainly check it out, I've never heard of it before. Its nice to find things at times when you know something is not right, and then all of a sudden you read a medical description and its almost as if you are reading about your very own life from someone who doesn't even know you!

All My Best,
Jason

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Hi Jason, my brother is having almost exactly the same thing as you, except they don't last as long (maybe 30 sec) but has them multiple times per hour. He also has a chiari and cranial settling. What have the doctors told you about your spasms/convulsions? They said my brothers was called "myoclonus" and that it was non-epileptic.

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I have had some of these symptoms as well. My post a few moments ago I posted something similar. Have you had an mri os your entire spine? I have something called spinal stenosis, nerver root cysts, DJD, thoracic rotoscoliosis and severe oa in my neck as well as scoliosis throught out my spine with questionable tetheres chord with that being said all of these can cause your symptos as they caused mine.
I also realized that I have epilepsy which explained some of my symptoms. One NP said she thought I had 'nervous system convusion" one doc even suggested a rare form of demyelinating EDS which leaves no trace of myelin destruction and plaquing like MS.
I woudl make sure they get you an MRI of your entire spine. It is through this that they found the damage that was really going on. Some docs say nerve root sleeve cyst are incidental findings but they actually do cause symptoms.
Do these episodes last hours or minutes. Is there any lapse in consciousness or change in mental status, confusion or feeling of fatigue or over whelming exhaustion after wars.
I do believe this is related to EDS but I cannot of-course say this for sure.
One neurosurgeon said that neural root cysts can cause these spasms.

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Sharon - how do you get your doctor to just GIVE you a spinal MRI? I can't just go in and ask for one. They could care less if its an idea I have on my own, they don't want to hear it. And I'm not going to switch doctors, THEY'RE ALL THE SAME. Is there phrasing or a way you go about just GETTING MRIs? Gabe has had a broken elbow for over a month how and he's going to his third doctor to just get a MRI because HE CANT MOVE IT. Its so frustrating, I just want to hit these doctors in the face with something the equivalent of a large textbook or something. Or train a tiger and bring it with me to all my appointments and if they don't listen to me, I can sick the goddamn tiger on them! Sorry. Frustrated. I just wish I could just GET the tests I want, not have to beg on my hands and knees to people who could care a shit less about me and never get what I need! ....

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I had constant fasiculations/twitching all over. I had bunches of weird blood work done at Cleveland clinic and was found to b deficient in vitamin b12. It was more than a simple b 12 level to diagnose. Took vitamin b12 shots for a year and it helped tremendously

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Dear Deanarose, numer one you must find thre right doctor. I have changed my tactics, doctors work for me. Do you have scoliosis? The best way to get what you want is to have the right doctors. It took me 41 years and many tears to get the right diagnosis. It took really seeing that no longer was my body hiding the secret. My scoliosis is significant. They do watch the neural root sleeve cyst. I do research and if they try to say something I researched and found a neurosurgeon to help me. My neurologist is wonderful and knows my conditio. He was wonderful even my firstvisit and said "you have been neglected long enough". My pcp is also a great help. You sometimes do have to find someone who knows a doctor. If you are in Maryland I can give you some great docs who value the human being behind the symptoms. Blessings

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Dear Deanarose, numer one you must find thre right doctor. I have changed my tactics, doctors work for me. Do you have scoliosis? The best way to get what you want is to have the right doctors. It took me 41 years and many tears to get the right diagnosis. It took really seeing that no longer was my body hiding the secret. My scoliosis is significant. They do watch the neural root sleeve cyst. I do research and if they try to say something I researched and found a neurosurgeon to help me. My neurologist is wonderful and knows my conditio. He was wonderful even my firstvisit and said "you have been neglected long enough". My pcp is also a great help. You sometimes do have to find someone who knows a doctor. If you are in Maryland I can give you some great docs who value the human being behind the symptoms. Blessings
You have the right fire them, you have the right to report them and you have the right to have the services you deserve. Iff a doctor refuses to look at educational meterial. I go into an office armed with my history and know what I want. Thats how I get it done
This is my experience in the medical field if you are a woman and you have a miriad of symptoms if you dont come in confident and armed they treat you like a child and sometimes not respectfully.

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I live in Oregon :(

Yeah, I've just changed doctors so much, its so exhausting trying to find a new one. And they all seem to have this buddy system, and if you happen to not like a doctor they know personally, they'll treat you like shit! Its awful! And they seem to react strangely to me giving them information. I'm at a loss. I spent my junior and senior year of highschool "battling" doctors, spending 90% of my time shaking with rage and screaming at windows and bawling my eyes out trying to find someone to help me. Eventually, I've just gotten tired of it all. I have no idea where to go anymore. The idea of trying again, makes me instantly exhausted and hopeless.

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My daughter has something similar.she has EDS as wells We don't know for sure what's going on yet. She's has the sever muscle contractions causing great amount.ts of pain and they last hours. They started after the tethered cord release and have progressed. Sometimes looks like a seizure but mostly just sever contractions. U can watch the muscle muscles crawl and move under the skin (like alien trying tos get out) she complains that her internal muscles and stomach contract and move constantly. So could be a few things happening I guess. She is have a 5 day video monitoring on Monday. I know the dr is already set on pseudo seizures. But we shall see.

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I truly understand what you are going through and I'm very sorry. For spasms, I too have tried everything and the only thing that works for me is Zanaflex. However, I do have to take a rather high dose. I also take Lamictal which is an anti-convulant as well as a Bipolar medication so for me it has a dual purpose. Lastly, I take Cogentin which works as well. If I can help in any way, please feel free to email me anytime ... ShelbyLynne24@gmail.com

Oh, and for my chronic pain I am on the Butrans patch and it has been a godsend. I believe it helps with my spasms as well.

Best,

Shelby Lynne

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