Undiagnose Involuntary Muscle Contraction Condition

General
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We’re quite desperate and running out of options. All we’re looking for is a little insight and a new set of eyes. My wife’s condition is worsening day by day and our local neurologists have no idea what she has.

We’re not asking for a diagnosis via email (although, in all honesty, we desperately want one), but just would like to know if you’ve ever heard of someone with such symptoms and could point us in a direction. I could attach a longer story as well, if you’re interested.

If nothing else, we’d like to know what to call these contractions. Neither Tic nor Spasm seems right.

We suspect that this may be related to 12 years of Paxil use. She’s switched from Paxil to Zoloft and Desipramine and is now tapering off those two entirely, but that is a slow process.

Here’s her story:

I have an undiagnosed involuntary neck contraction condition that is steadily worsening. I am now in misery every day for most of the day. I have a lengthy description below.

In a nutshell, this has progressed from an unusual ‘spasm’ that started 18 months ago only when lying down and resting my head (unlike most spasms that are provoked by movement and relieved by rest.)

I could stop them by sitting or standing or just lifting my head from the pillow. It didn’t matter if I leaned my head back, to the side, or forward to rest it. The spasms began when the head was rested against something.

There are several distinguishing characteristics of this (some of this is repeated above and below):

· After it contracts, it does not release by itself like a tic or myoclonic jerk

· I can release it myself if I concentrate, which I could never do with a leg spasm

· I can sense them beginning and sometimes, if I concentrate, I can stop them before they really contract. (This control is steadily lessening.)

· The contractions haven’t generally been at all painful, as a leg spasm would be, although it is very painful when I lose control of them and they go on for a long time. (I’ve worsened to this point.)

· They began only when lying down and resting my head and this is still when they are worst and least controllable.

· At first, I never had them when up and around, although this gradually changed. Now walking seems to provoke them.

· The contraction pulls my head straight back, not to either side. I feel contraction in both front and back neck muscles, but much stronger in back.

· Certain things provoked it even early on, like watching television and driving. Later on walking and talking. Physical or emotional stress.

· Other things would distract me from it and stop the spasms. Going outdoors and working in the garden. If I doodled (drew shapes) on paper while talking the spasms would stop as long as I watched myself doodle. If I looked up while doodling, the spasms would start. Working on a computer doing research would help as long as I was working the mouse and keyboard and controlling it. If I was just watching something, it would provoke the spasms, like watching television. I found I could cut my son’s hair without spasms. Something to do with hand movement and focus, I guess.

They have gradually gotten worse and the various ways I could control them have ceased to work.

I have been to family doctors, PT, PMR, neurologists (6), psychiatrists/therapists (3), neuro(bio)feedback, hypnotherapists, chiropractors, acupuncturists, and even a psychic. No one has been able to give me any insight.

Online sources have stressed the importance of testing and making a diagnosis. The neurologists I’ve seen have said that tests such as an EMG, for instance, wouldn’t tell them anything they can’t see. They tell me I’ll probably never get a diagnosis.

If you have had or known anyone who has had symptoms like mine, please let me know. I would appreciate knowing what the diagnosis was, if any, and/or any treatment that helped with the symptoms. I’d also like to know what tests were done to reach a diagnosis.

I’ve tried massage, PT, acupuncture, flexiril, Zanaflex, nortiptyline, benzodiazapines, vicodin, baclofen, and neurontin. They gave me Valium, Toradol, and morphine in the ER. The drugs have sedated me enough to sleep, but they (most notably Flexeril, Zanaflex, and Baclofen) haven’t had a noticeable effect on the actual spasms, although perhaps Baclofen hasn’t been tried long enough at a high enough dose.

Thank you.

2

Hi again

i did reply to this on wego i am guessing you might be the same person??? it could be something like cervical dystonia thats what it sounds like to me. I am NOT a dr and i hope that you are able to see a movement disorder specialist that might be able to give you some insight. Its very hard to find a dr that actually gets dystonia as a lot seem to believe its "all in your head" i have been through this and finally have validation from a geneticist who took one look and said thats dystonia and theres no way anyone with that amount of movement would be able to walk! I have generalised dystonia and it is possible that mine was caused by medications too although this is not entirely clear yet, geneticist is looking at the possibility of mitochondrial disease a type of muscular dystrophy where dystonia can be a symptom.

There isn't really an actual test for dystonia unless its dopa responsive which means it responds to a trial of leva dopa this can be genetic or not genetic. theres a lot of different reasons for dystonia and sometimes there is no cause it just happens.

Mine is generalised but i do get movements in my head including it pulling back so hard that i cannot get my head up. I have discovered a high back rest in my wheelchair helps considerably and i am guessing that when i actually get a proper one with actual head rest and proper support this may also make a big difference so perhaps this may help?? Obviously with a normal chair though, not a wheelchair.


Erin

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Well to tell you the truth i haven't found neurologists movement disorder or not that helpful if it weren't for my geneticist i do not know where i'd be. It could well be from the meds. But a lot of drs would never admit that either say it wasn't dystonia or say its conversion disorder or whatever!!!! I mean having conversion disorder hanging over you and all in medical records is definately NO picnic thats what happened to me and i have not met anyone on line with dystonia who has not had conversion disorder/psychosomatic/psychogenic diagnosis at least once if not four or five times. I have also heard it said that many places have no idea about dystobnia and its very hard to get a dx because they dont know what dystonia is!!! Although if they are on the board of ADS one would think they might have a clue. In australia its a bit different.

I must admit that the statement about sensing them beginning i actually get this myself! weird isn't it? i do not have control over them not anymore. I only know what things help to stop it happening to begin with such as staying seated etc

hope you are able to get answers i do not have full answers about everything that is going on dystonia is simply a symptom of many symptoms of the overall condition which they think may be mitochondrial disease. Do you have any other symptoms?? dystonia/movement disorders can sometimes be secondary to another disease maybe a geneticist would help in case this is a possibility although the medication sounds possible.

good luck

Erin