Question about Dystonia

Hi. I am not sure this is the problem but I'm trying to figure it out. My son is 18 - for the past year or so he has started really twitching and shaking - it almost looks like a seizure. But it's mostly when he's stressed or upset. I have seen him do it on a few occasions when he's not upset. I have seen him start to twitch and I think, oh no, here it goes, because it seems to escalate and it's very hard for him. He's usually social and outgoing and involved but sometimes he gets really down on himself. Our doctor put him on celexa, (for depression and anxiety) and maybe it helps some but it's hard to tell. He called from college yesterday and said he's really having a hard time with it. His head twitches, his arms - it's quite a whole-body thing but it usually starts at his head. A counselor told him it's anxiety but he feels like it's not that simple because he really doesn't have that heavy of a load and he's loving college. I've been reading about dystonia and I guess it can have an emotional onset but I don't know that emotions explain it all for him. I have lupus and my birth mom has m.s. and I wonder if that could be a predisposition for something. I'd love some advice and direction. Thanks so much. - Kimberly

Tags: body, dystonia, family, history, lupus, movements, ms., neurology, onset, shaking

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Permalink Reply by Mo on October 9, 2009 at 2:09pm: Hi Kim and welcome,

Has your son been tested for ms? I would try a movement specialist. If you let us know what state and city you are in, someone here may be able to direct you to a doc of higher regard.

I cant diagnose him but if he has jerking, it is a symptom of dystonia? Can you tell us anymore about family history? Anything happen to your son? head injury< tons of ear aches and infections ( i ask this one because I found on another group some common themes amongst almost all of us), vaccines, etc? any other neurological history?

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Permalink Reply by Kimberly Nelson on October 9, 2009 at 5:09pm: Hi Thanks for responding. He hasn't been tested for ms. We're in Utah. He's in Ephraim Utah so he'd have to go to Provo or somewhere.

I don't know much family history since I was adopted, just that my birth mom and one of her other daughters has ms and I have lupus. On my husband's side there's diabetes. He hasn't had a head injury that I can recall. He had tubes in his ears as a toddler but that's all. He's been pretty healthy. Our FP physician and the counselor both wrote it off the anxiety but I'm sure that's the first thing to consider. But we need to consider the next thing. Thanks so much.; ▶ Reply to This

Permalink Reply by kdorff on October 10, 2009 at 3:24pm: A family history of movement disorders, uncontrolled movements, stress aggravating those symptoms-even to the point that the illness appears to be psychiatric, etc... could certainly describe dystonia or another movement disorder. It is reasonable to arrange for him to see a neurologist. In particular, you would want to take him to a movement disorder specialist (MDS), who should be able to watch his movements and decide if their is a neurological reason for them, dystonia or otherwise. If his FP doctor thinks otherwise, you should probably be asking for a second opinion. Well 18 year olds do not routinely lose control over their muscles, and I'm assuming that counseling and psych drugs aren't helping much or you wouldn't be posting here. I wish you both luck!
-Kat; ▶ Reply to This

Permalink Reply by Kimberly Nelson on October 11, 2009 at 6:25am: Thanks so much Kat. I looked up movement disorder specialist in utah but didn't find much listed that way. I'll keep looking but if someone has a referral, that would be awesome. An MDS is a subcategory of neurologist?

I think you're right about how stress can precipitate the onset of something latent. I had a horrid year the year my lupus started back in 91.

Thanks so much for your time responding.; ▶ Reply to This

Permalink Reply by Joe on October 11, 2009 at 9:08am: Hi Kimberly,

I second the motion with regard to a second opinion from a neurologist QUALIFIED (a movement disorder specialist is just such a person) to render an accurate diagnosis as to what might be causing your son's uncontrolled movements. It never ceases to amaze me how totally unqualified people (family practitioners, counselors for god's sake-I know this because I'm in a counselor's training program right now!) are making extremely important diagnoses that could have a potential life long impact on a young person. A diagnosis of psychogenic origin should be made after ALL potential organic causes are ruled out! I can't stress this enough to people asking for advice...find a doctor who is willing to take the time and energy necessary for you and your son to receive an accurate diagnosis...please, please don't rely on a lazy FP or an ignorant counselor's "diagnosis."

I'm going to jump on my soap box now. I wish more so-called "professionals" would remain within their "scope of practice." When I first presented with symptoms, my FP was secure AND professional enough to tell me that what was happening was, "above his pay grade" and also, "that's why we have specialists." He told me that his training and expertise was in the "runny nose" department, not neurology. As for the counselor you mentioned...well...he/she may be well meaning, but I'm reasonably sure that they have received little...more likely absolutely NO training in medical diagnosis and is expressing nothing more than an educated layperson's opinion when making such determinations as to the uncontrolled movements experienced by your son being psychogenic in origin.

Off the box now.
All the best,
Joe; ▶ Reply to This

Permalink Reply by lexiesmom on October 11, 2009 at 8:48pm: DR"S they made my daughter HATE that word, "psych" she was just shy of 13 when her first full dystonic episodes hit her and DR's went staight to "it is conversion disorder" and "she needs a psych eval" "she has a abnormal attchment to you" tehy had me convinced she was stressed out and looking for attention or needing intense mood stabilzation..........ok well we did the eval and she is not a psych patient she was cleared, a new set of doctors went further and listened to us and now we have a diagnosis she has primary generalized dystona that is episodic in nature and non dyt1 so she is rare but not a psych canidate. we wasted time effort energy and emotion on not treating her for disorder she had because she was to attached to me? hell she was 12 and scared in a hospital far from home and friends in extreme pain and unable to control her body!!! I would hope she was attached to me! Doctors need to look carfully at all aspects and not just write off what they havnt seen before. I was told "dont look for a zebra when its just a horse." Well my daughter is that zebra and i would think i zebra would stand out !!
get your son the eval but keep pushing for other tests and input, believe in him and your instincts; ▶ Reply to This

Permalink Reply by Kimberly Nelson on October 14, 2009 at 3:52am: Joe and Lexiesmom,
Thanks tons. I really do appreciate the encouragement. You reminded me of something I should have remembered - that a psychogenic origin would be AFTER all else is ruled out. Not first. It just seems to easy to go yeah, that's stress. In fact, that reminds me when I had meningitis a while back, the first ER we went to said I was having a stress migraine. They didn't even wait to see my 60,000 white count before discharging me on some pain med. We really do have to take care of our own.

I think we're all on your soap box with you. I went through several doctors in my early years of lupus - hearing all sorts of diagnoses and theories and "all you can do is take steroids." Then after I swore I'd never go to another doctor until it's a coroner, I ended up in the ER and found a doctor in Colorado who said, "If these doctors would just learn the right tests to do, they wouldn't put you women through all these years of trauma for nothing." She did a few tests and said, yep, it's lupus, put me on the right drugs and I was a new person. I was like, what the heck?! All those years of trying to get antidepressants and painkillers to fix a systemic thing. Some people really overrate the MD after a name...but there certainly are huge differences.

Anyway, yeah, thanks for the encouragement. I'm going to take him to the dr in SLC.
-Kimberly; ▶ Reply to This

Permalink Reply by beka on October 19, 2009 at 3:17pm: Use your mothers' intuition- gut instinct... Don't belive anything until you have proof and a believable and qualified physician who knows how to do a neuro exam !

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Permalink Reply by kdorff on October 11, 2009 at 1:25pm: An MDS is a neurologist who has special training in muscle related neurological problems, the three most common being dystonia, Parkinson's, and essential tremor. Part of the diagnosis of these illnesses is just observing a patient and deciding whether the pattern of movement (or lack thereof) matches other diagnosed cases, so it is really important that you see someone who has seen a lot of patients with symptoms similar to those of your son. If at all possible that means getting him to an MDS. If your son's symptoms are intermittent, you should show up with a video recording of him during one of them.

I have no direct knowledge about the MDSs in Utah. (I'm on the west coast.) If someone on the board here does, hopefully they will make a recommendation. In case no one does...I just went to the WE MOVE website (a movement disorder group at http://www.wemove.org/TCD/adult.asp). They allow neurologists with specialties in movement disorders to sign up at their website. The list isn't vetted, but they do list a movement disorder center run by a neurologist in Salt Lake City. The contact information is

University of Utah Movement Disorders Center
Assistant Professor of Neurology
Contact: Lauren Schrock, M.D.
729 Arapeen Drive
Salt Lake City, Utah 84108 USA
TEL: 801-585-9386
FAX: 801-587-8381
E-mail: Lauren.Schrock@hsc.utah.edu

Dystonia patents (and maybe other movement disorder patients--I don't know) routinely start out seeing neurologists anywhere from every month and a half to three months, so it's unfortunate that the center is so far away from Ephram. That said, it is really important to have an experienced neurologist because diagnosis and treatment varies a lot depending on the skill and experience of the practitioner. Let me know if there is anything else I can do...
-Kat; ▶ Reply to This

Permalink Reply by Kimberly Nelson on October 14, 2009 at 3:41am: Thank you so much. I emailed Dr. Schrock and she emailed back. (How crazy is that?) She said she can see him and just get a referral which I got. So we'll start there. Thanks so much for your input and help. It's kinda hard to sort out stuff on the general internet.; ▶ Reply to This

Permalink Reply by Kimberly Nelson on November 5, 2009 at 6:03pm: Well, I got my son to a neurologist the other day. We couldn't go to Dr. Schrock like we wanted to because our insurance wouldn't pay any at all. But maybe we're gonna have to work something out. The neuro we went to said he has stress-induced tremors. He told him to try Lexipro and learn to manage his stress. I said, well, a lot of people have stress but they don't do this. He said, some people get ulcers, some get migraines, some get tremors. I told him how severe they are and how tired he is afterwards and he just said yeah. He ordered an EEG just to check but we haven't done that yet. I mean, I'm glad if it's nothing, but I just don't think it's so simple. It's stress and tired induced - yeah, but normal people don't jerk like that. Or do we just say "dystonia" of unknown origin or something like that? It's hard cuz I have no film of him doing it and it seemed like the neuro didn't understand the severity even though I tried to explain. He's coming home for Thanksgiving. Maybe I should stress him out just so I can film him. That's mean though. I guess we'll just see what happens for now....; ▶ Reply to This

Permalink Reply by beka on November 5, 2009 at 8:06pm: Hi Kim - what about an MRI ? A scan ?? Can you pay out of pocket to see Dr. Schrock ?
Female docs tend to listen more before telling you it's all in your head...many patients come to terms with the idea of seeing a MDS by seeing those out if their insurance plan..and finally getting a diagnosis....Why dont you let your son write down his symptoms and then let him relay the symptoms to the doc...Try not to talk for him in the office unless he has speech problems too...? They need to hear him...

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