Discussions By Condition: I cannot get a diagnosis.

Weird symptoms, maybe neurological.. need your help!!!

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: dancergrl77
  • January 10, 2008
  • 01:44 AM

Ever since my childhood, I observed my mother display weird behavior. Often, she would tense up, her facial muscles would tighten and almost spasm as she became overly excited about something. Sometimes, she would even repeat thoughts out loud. At first, this thing seemed voluntary as she would only do it when nobody was around. However, as she has aged and I am now an adult myself, it seems as though this behavior as increased significantly. She either doesn't care who is around anymore, or she can't control the urge, although when you call her out, she stops. She doesn't speak much about it, but has said she doesn't know why she does it. NOW, to make matters worse, I have been trying to fight the urge to display the same behaviors. I don't speak my thoughts out loud, but I do fight the urge to tense up my muscles. I find myself with my arms crossed and my hands tightly squeezing my arms as my face, particularly my mouth, tightens hard. This can go on and off for a while, yet I can stop it at anytime which suggest to me that it is NOT involuntary. The urge is strong but I can definitely keep myself from doing it around people. Im scared that it will worsen and I don't like not knowing why this sensation occurs. I've never met anyone else that displays the same symptoms. PLEASE HELP. Does anyone have any idea of what this could be, maybe neurological??? Thanks.

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19 Replies:

  • It does sound like it possibly could be neurological>Did your mum have a mri and a neurological examination?
    Anonymous 42789 Replies
    • January 10, 2008
    • 03:23 AM
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  • all because your mother behaved that way doesn't mean that you will behave the same way. Make a huge effort with hypnosis. there are a ton of tapes and cds...go with it...it does sound like your mom may have a tic disorder, possibly Tourette's disorder or suffer from mental illness;http://en.wikipedia.org/wiki/Tic_disorder If the hypnosis does not help, try bio-feedback...
    Monsterlove 2921 Replies
    • January 10, 2008
    • 07:29 AM
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  • Thanks for your input. I did take a look at your advice, however, I know it's not Tourette's as her "tics" are not involuntary. They are more like spasms. For example, while driving she squeezes the wheel so hard that her hands hurt and go numb, and even though she stops herself when she wants, she still can't stop it from starting in the first place. She will repeat things that were just spoken, either by herself or another person, while tensing her entire body. She does not just burst out random words, instead they are premeditated. Also, I am not looking to repeat behaviors, in fact I don't want the same behaviors. I am constantly fighting these urges. If anything, whatever she has must have a strong genetic component. Before I look into treating the symptoms, I would like to understand the problem. Otherwise, I may be trying something that wouldn't work or could be harmful. Thanks again for your suggestions. If anyone else has heard or seen this behavior, or may know of a place I could get more information, I would greatly appreciate your help. THANK YOU!:)
    dancergrl77 3 Replies
    • January 10, 2008
    • 08:15 AM
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  • Go easy on your mum.Once you hit menopause (if you are anything like me and the article in The Daily Mail.co.uk I read today) you dont care so much what people around you think. It is one of the benefits of menopause. I talk to myself, chat to the cats, repeat things people say if they are worth while.And if I feel very tense inside and perhaps angy I feel my face reflect this by the muscles tensing and my mouth pursing. I have a daughter that can make me very cross inside and my face shows it even though I am trying to hide it. Gosh I hope you are not my daughter.LOL:D If you get the chance read the article I have mentioned. The writer expresses things much better than I do.Dailymail.co.uk "Requiem for a lost youth: Hitting the menopause."It is about the differences that occur and how they can be a joy.Maybe you can help your mum and show her the article.:cool:
    chrismia 159 Replies
    • January 10, 2008
    • 04:11 PM
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  • sorry, you provide more evidence of Tourette's since she is unable to control going into the condition....take care of yourself and have your own life.....have you talked with a doctor about your concerns...I think moving out so you aren't be exposed to her behavior would be a positive step for you. Does she do it in front of other people or is it just for you?
    Monsterlove 2921 Replies
    • January 10, 2008
    • 07:36 PM
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  • Dancergrl... CONGRATS! YOU HAVE ASKED THE RIGHT PERSON!!! GOD MUST BE SMILING ON YOU TODAY! I don't come to this site much. I think twice in the last year. Today, I just "happened" upon your question quite by 'accident'. Though I do not believe in "coinicdence". Not to say I'm more "special" than any others who've responded to you, I just happen to have a FAMILY FULL OFF PEOPLE JUST LIKE YOUR MOTHER. And, have gone through living ***l trying to get my son diagnosed when he was a child. (Moved half way across the country) There was no internet yet! Anyway- I'M HERE TO HELP!:I HAVE ONE (ACTUALLY TWO) WORD(S) FOR YOU- "TOURETTE SYNDROME"!!! My adult son has it, his father and his grandfather had it. It's genetic and it is pretty much equal with males and females diagnosed with it.What you see your mother doing and feel yourself having the urge to do is called "TICS" or "ticking". Facial grimacing, words or phrases blurted out, tensing and jerking of any body muscles and even more "complicated" "tics" are the symptoms. The vocal part (vocal tics) is called "Copralalia". One can have a mild case and others quite severe. My son was completely incapacitated from it for a very long time. Luckily much more is known about it today than then. There was a Montell William's Show on it a couple weeks ago and my son was on a local similar TV show since he has been named the "worst case known in history" until just recently they found another who took that noble title. Yes, in SOME ways it is 'voluntary', but NOT REALLY! It depends on how bad of a case one has and how much self-control and also the ENVIRONMENT one is in. Tics can sometimes be REPRESSED for a certain time, but inevitably 'must' "come out". Times of extreme stress make it worse and also when one is at home or any other place they feel comfortable to "let it all out". Often worse at home after repressing it for some time in public. Though may come out in public no matter what if under extreme stress. Ironically the mere stress of trying to focus ******n NOT expressing the urge to TIC can cause worse ticking.Another word to help you is... NEUROLOGIST! And a GOOD one who specializes in treating MOVEMENT DISORDERS because that's what Tourette Syndrome/"TS" is.In your mother's day, as in my son's father and grandfather's day, genetic 'disposistions' such as this were FAMILY SECRETS because it made you different, it meant you were "weak" in some way. That's just how they were taught. My son's great grandmother (who also had it) taught her son/my son's grandfather a big STORY to tell whenever anyone asked why he "acted like that". The story was that "He fell off of a tractor and had a serious head injury when he was 16". They were "close" with the lie... It is a problem with the BRAIN.Though it was "discovered" in the 1800's and named after the doctor who treated a prominent citizen for... Dr. Guilles de la Tourette- Even until just the last 10 or 20 years, not much was known about it, what caused it etc. Also, it's so rare even today, most family doctors miss it in rendering a diagnosis. They may have heard of it in medical school one day, but it's not seen much. Often, neurologists know what it is, they sometimes mistake it for something else or miss it entirely.You must find a neurologist who specializes in movement disorders like Parkinson's disease etc. "TS" is actually like the opposite of Parkinson's because Parkinsons is caused by too little Dopamine and TS is caused by too much. (To put it simply, but oh how I wish it were that "simple")We are very fortunate to live in the Houston area to see the top neurology clinic in the worls for movement disoders. They even have a "TS CLINIC". It's "Baylor College Of Medicine Movement Disorders Clinic". Pope John Paul II was treated by the professor there, Dr. Joseph Jankovic. The next best Dr. there is Dr. William ONDO. ***THIER # IS (713) 798-7438If you're anywhere near the Houston, TX area you may want to bring her there or at least go yourself. If she won't go, because of the way she was brought up or whatever, if you go for yourself (to see if you may have a mild form) and then talk to her about it, you may be able to remove the stigmatism and also help the relationship. There are many great medications now to help. My son takes Orap and Valium for it.YOU MAY ALSO CONTACT THE NATIONAL TOURETTE SYNDROME ASSOCIATION (you can find their # easily online) then ask for your LOCAL CONTACT NUMBER who would be your local TSA director. Ask that person what doctors they recommend for your area and you also may be interested in attending some of their MEETINGS for moral support and education. Yes, there are others out there in this same wierd and stressful situation ;)Though this is purely a neurological disorder, not psychiatric, sometimes having TS "predisposes" one to have psychiatric illnesses/diagnosis' along with it. (But not always) Just ahving to deal with the urges can cause an "anxiety disorder" or "depression". In additon, there is OFTEN another psychiatric d/o "co-morbid" (along with) TS... It's called OCD/ Obesseisive Compulsive Disorder.You can look these up online. There's a lot out there. Good luck to you and God Bless!
    Anonymous 42789 Replies
    • January 11, 2008
    • 01:00 AM
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  • PS- Sorry to post twice, but I read your reply to another poster: "...her "tics" are not involuntary. They are more like spasms. For example, while driving she squeezes the wheel so hard that her hands hurt and go numb, and even though she stops herself when she wants, she still can't stop it from starting in the first place. She will repeat things that were just spoken, either by herself or another person, while tensing her entire body. She does not just burst out random words, instead they are premeditated."TS tics are NOT purely involuntary as some suppose. It is more like an irresistable URGE. It also manefests as sapasms. In addition, there is often another movement disorder that goes along with TS called "Dystonia", and also callled "Dystonic Tics". What you describe above is truly just that, even tensing the whole body-- ALL of what you describe. TS's may also do it SEEMINGLY 'on purpose' to avoid doing ANOTHER tic that she is afraid of doing. (called 'replacement tics' or 'substitue tics) TS is a very complicated neurological (brain) disorder involving the brain, muscles and psych. Each case differs in some way just like any other disease or disorder. It's an individual thing and ALSO VARIES IN THE SAME INDIVIDUAL OVER TIME. The time of variation can be minutes to years. (The type and frequency of the tics and spasm)Repition of her own words or sentences AND the words of others is also classic in TS. Also uttering non-sense noises. They CAN and do also stop it in the middle of it. (Wouldn't you?) In addition, what you consider "premeditated" may be just that, but not in the way you think. It's like a phrase keeps coming into the mind and they "HAVE TO" say it. They will repeat words of others or what they hear on TV or radio etc. Please consider. Do some research and see a QUALIFIED neurologist via referral from the National Tourette Syndrome Association. Yours truly, hisglorygirl
    Anonymous 42789 Replies
    • January 11, 2008
    • 01:42 AM
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  • Wow, everyone seems to be pointing to a diagnosis of Tourettes Syndrome. I was so sure that this was way off base as I studied this sydrome in my undergrad as a psychology major. However, everything I learned involved extreme cases. My mother, nor I, have any impairment in our daily functioning. If anything, it's more of an annoyance that causes great confusion. Especially when nobody around shows the same behavior and all the TS people I have seen show quite typical symptoms that would be hard to misdiagnose. Due to your last posting though, I may have to reconsider and look into some more mild cases. Perhaps this is the case after all. Thank you so very much for your insight. All though I do not wish for a diagnosis of any kind, I do hope this is the answer I am looking for. I will keep you posted with my results if you happen back onto the sight. :o
    dancergrl77 3 Replies
    • January 11, 2008
    • 06:34 AM
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  • Yes, tics and tourette's. Just go to your doc for a referral and bring him a video or your mom and yourself. Your mom has suffered long enough. Listen to "hisglorygirl". To chrismia. I'm all about free and natural behavior, but ask your friends and relatives if they notice anything odd about you when you are angry. Tenseness and anger could be caused by hormone fluctuation, like PMS, but if they think you are over-reacting then why don't you and your daughter go talk to someone (professional) to iron out your differences instead of bottling it up?
    rad-skw 1605 Replies
    • January 11, 2008
    • 00:23 PM
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  • I think it is polite to only give out advise when it is asked for.Yes of course I have hormonal problems as I mentioned. Unfortunatelywhere I live there is not much acess to your type of professional advise.I cant even get the local doctors to give out HRT in any knowledgable way.I do not like your insinuations that there is something wrong with me.I concider I have a good relationship with my daughter.Maybe the mother in this case thinks she is ok but just has an over fussing daughter. The daughter is right to be a caring daughter but sometimes people over worry about the people they care for.But you have never even met me.
    chrismia 159 Replies
    • January 11, 2008
    • 01:26 PM
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  • Has your mum seen a neurologist?Does she have other symptoms?Is she does look into Picks disease but this has many other symptoms involved and not just Echolalia.
    Anonymous 42789 Replies
    • January 11, 2008
    • 06:54 PM
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  • Whoa.... let's just pause for a moment and remember the reason we are all here, to help. Everybody has the best intentions when posting their experiences and suggestions, I appreciate them all. Of course, I will give each persons advice some thought, but inevitably will weed out those that don't help. To "rad-skw: I agree, my mother has suffered long enough and since she doesn't seem to be doing anything about it, whether be it pride or ignorance, and it is now beginnig to affect me, I will take the time to find the answer. THis forum was my starting point. However, please don't attack others who are only offering their help. I agree that leaving it be is not the best idea, but lead others with suggestions so that they don't go on the defense and shut you out completely. Thank you for you thoughts and I will be looking into TS and Tics with a doctor. I much appreciate your help. To "chrismia": I agree it's only polite to give out advice when it's asked for, but please don't go attacking me because you're upset with anothers posting. I am not an over fussing daughter. In fact, I rarely if ever talk to my mother about her bahviour because she becomes shy and embarrassed about it. HOWEVER, I can no longer leave it alone b/c it is now affecting me as I am gaining these symptoms, only slightly differing as I don't repeat words outloud. I only tense up my muscles and have an obsession with outling words and letters quitely, as though I am breaking down their parts. I know, weird, but me. I thank you for your thoughts, and truly enjoyed the article. To "mkor4: No we haven't seen a Neurologist, as she doesn't like talking much about it. My family is not the open - talkative type. I haven't heard of Picks disease as of yet, so that will definitely be the next thing I look up. Thank you for your suggestion!I just want to say thank you to everyone who has posted their advice. It was extremely difficult for me to post this information in the first place, as it is quite personal and embarrassing. THe one and only time I tried to ask friends around me who have seen my mothers behavior, what they thought, they only laughed at the suggestion of TS or something serious. I was quite ashamed and never again looked into it, until now. It bothers me thay my behaviours are progressing and that I don't understand the reasoning or problem for that matter. For this, I am so thankful to the insight I have gotten here, and welcome more as this is just the beginning of my battle. Again, thank you!:)
    dancergrl77 3 Replies
    • January 11, 2008
    • 10:25 PM
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  • yes, dear, it's tourretes or another tic disorder. I have it, so I recognise the symptoms . Glory describes it well. A little bit of obesessive compulsive disorder is a comorbid condition, it seems this may be a part of your symptoms too- the outlining and taking apart words. In fact, some people who tic have difficulty recognising whether what they are doing is OCD or a tic, they become inertwined.
    painismymiddlename 2 Replies
    • January 12, 2008
    • 01:53 AM
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  • Sorry if I offended anyone, but when posters AND answerers write about themselves personally, I would assume then it is open to comment. I don't think I was attacking Chrismia with a suggestion that if she was angry, to work it out, instead of internalizing it. Life is too short to be cross.
    rad-skw 1605 Replies
    • January 12, 2008
    • 01:01 PM
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  • Dancer- Praying for you and your mom. Came here today to check. Please keep us posted. Have you managed to contact your local TSA yet to start your investigation?Love and prayers!
    Anonymous 42789 Replies
    • January 21, 2008
    • 09:41 PM
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  • Clinching my jaw, curling my toes, wrenching my neck, are just a verry few of the things that I am compelled to do. Althought the urge to do them can be at times extreamly overwhelming (to the point where I can lose controll by giving in fullyto my ccompulsions) they are voluntary movements. I can control it (it, meaning ever present urge to clinch a part of my body or keep a rhythm) when I am out in public or around friends but around my wife and son I give into those urges. I have had this ever since I was a child and this is the first time I have heard of someone else discribe the same symptoms that I experience.
    Anonymous 1 Replies
    • January 7, 2015
    • 00:41 AM
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  • I have that. I have those exact same symptoms since I was a child and did not know how to explain to people or physicians, so I said nothing. The urge to clinch is always presant and often overwhelming but controllable. I believe It gets worse with stress. There is also the compulsion to keep rhythm at times.
    Anonymous 1 Replies
    • January 7, 2015
    • 00:55 AM
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  • Hi people! It is very surprising to find out that other people have this. I have it (27), as well as my older brother (35) and now his 2 year old son. My parents never had this and so when we saw my nephew do it I thought to look it up... for the first time! The closest thing I could find is Tourettes, but really is nothing like any of the cases I've seen in videos. So maybe we discovered a new unnamed condition here! Basically sometimes when I see or think about something I like, or even when finish a task that took some effort, my hand and face muscles tighten and my head gets red like it's going to explode. But despite that it often starts involuntarily, I can stop whenever I want. When I was a kid I was also raising my hands next to my head when doing this but now I've learned to do it more "indiscriminately", even without moving my hands or anything, but people can hear us squeezing our muscles because it is accompanied by heavy and short breaths.
    Anonymous 1 Replies
    • October 23, 2015
    • 09:13 PM
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  • I can confirm this as I've seen my brother several times. I don't think a neurologist can be helpful, because if it is something that is not known or documented then how am I supposed to trust what I am going to be told.
    Anyhow, if you guys find anything about this just keep us posted.
    Anonymous 1 Replies
    • October 23, 2015
    • 09:17 PM
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