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involuntary movements, tics, tingling?? (Read 12320 times)
Dawn
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involuntary movements, tics, tingling??
Aug 29th, 2011 at 5:26pm
 
Hi All!

I'm wondering if anyone has experienced uncontrollable movements with Moyamoya: tingling, hand flicking, leg tremours??? I have witnessed some with my daughter..I have spoken to stroke team and neurosurgery clinic and our other neurologist......no one seems to know why. I do know the movements vary depending on the day, exercise, level of fatigue etc. I'm guessing it has something to do with blood flow. Her MRI again indicates she is "stable" ..we are going to have another functional CVR next.(one last year, indicated things are fine). She is approaching 3 years post stroke and 3 Years post surgery in October.

I know there has been some documentation of chorea type movements and moyamoya.

I know there has to be some connection. My daughter never stops moving......though it's much better since her 2 surgeries.

I'm so thankful that she is doing so well..........but worry that the "movement" could mean progression of the disease. I'd like not to be so vigilant but I feel like we need to know more about this movement issue, in order to "relax" a bit.
Thanks!
Dawn
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tammy66
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Re: involuntary movements, tics, tingling??
Reply #1 - Aug 31st, 2011 at 12:32pm
 
my daughter , Amanda who is 9 and 1year post surgery for moyamoya tells me at times her feet or hands tingle or gets pins and needs.  I was concerned about that since her flow is now good per angiogram and mri/mra.  I asked the neurologist and he thinks it is because of Topamax. She has been on that for almost a year, 25mg then increased to 50mg because he would like her headaches to decrease.  Now, I was suprised because, never even thought of that as a side effect of the medicine, was thinking more along lines of moyamoya.  It still bothers me, so I just keep watching and writing everything down, have emailed Dr. Scott and he says Amanda is doing fine, let her be as normal as possible.  So I can see how any thing little or big that our kids tell us - can be worrisome and needs checked and not taken lightly.
I hope everything works out and stays good for your daughter.  Please let us know what you find?
I'll say a prayer for her and your family.
Amanda's mom - Tammy.
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Franken
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Re: involuntary movements, tics, tingling??
Reply #2 - Aug 31st, 2011 at 5:55pm
 
I have been on 200mg of Topomax for about 2 years for Migraine and Seizure Phrophylaxis, I get pins and needles in my hands feet on occasion also from it, and at first I thought it was a return of the TIA's but I never lost the ability to move my fingers or toes, and my neurologist assured me that it was a known side affect of the Topomax.
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momkaren
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Re: involuntary movements, tics, tingling??
Reply #3 - Aug 31st, 2011 at 9:02pm
 
Hi Dawn,

My son is 12, and just had his surgery done on June1st. He has recently (about 1 month) begun to "flick" (for lack of better word) his head, from side to side. He doesn't do it all the time, but he had never done this before. It's strange and I hate when he does this, it looks like he has Tourette's syndrome ( sorry to put it that way).

He is basically nonverbal, so he can't tell me if he has headaches, or feels pins and needles. Don't know if this movement has anything to do with Moyamoya disease, but every little new thing that happens, makes me wonder.

I am very interested in what you may find out.

Karen
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SD
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Re: involuntary movements, tics, tingling??
Reply #4 - Sep 1st, 2011 at 6:53am
 
A neurologist has done an EEG of our son for similar issues and diagnosed mild Epilepsy.  He is now on daily meds and subsequent EEGs have shown stability.
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Dawn
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Re: involuntary movements, tics, tingling??
Reply #5 - Sep 2nd, 2011 at 1:26pm
 
Thanks for all your replies and good wishes. I have wondered about side effects from meds as well. My daughter is on Tegretol and Aspirin.

We have just been referred to a Movement Disorder specialist, who is also overseeing the MRI./CVR...so I think I am very interested to see what he says.

Thanks again!

Dawn
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Mimi
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Re: involuntary movements, tics, tingling??
Reply #6 - Nov 26th, 2011 at 3:00am
 
I experience what you described regularly.  Since my initial TIAs in 2009, I have not regained feeling on my right side even after an STA-MCA bypass nearly 2 years ago, and I frequently get Parkinson like tremors in my left hand and foot and A LOT of tingling, especially when I am stressed out.  I've noticed that when I cry (which I do a lot since my surgery) I get a tingling sensation that shoots down my left arm right down to my finger tips.  I also have trouble opening jars, medication bottles, typing, etc.

I have had numerous EEGs but nothing has shown up.
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STrantas
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Re: involuntary movements, tics, tingling??
Reply #7 - Nov 29th, 2011 at 3:30pm
 
Hi all...sorry for the late reply.  I went through a bout of this over the summer...I still have minor uncontrollable movements, but not as pronounced as they were before...this started occuring 7 1/2 years post bi-lateral surgery.  Here's what happened...


Early in the summer I started noticing that I had ticks, as I called them...or involuntary movements...a shrug of the shoulder, or my foot would move back and forth as if I were nervous...or my thumbs.  I sought out a local neurologist who runs a "moyamoya task force" at my local hospital.  He put me on meds to increase my blood pressure (didn't work)...did an MRI/MRA, CT Perfusion, Angio.  At first they thought I had additional narrowing at the base of my skull...but that was ruled out with the angio.  I was also in touch with Dr. Scott, who did my surgeries. 

All the tests showed nothing to be concerned about...
Dr. Scott described them as choria type movements - cuased by the collateral blood vessels coursing across the basilar ganglia area of my brain (back of the head...).  He said the movements would eventually go away...and they have for the most part.  I find they are more prevalent when I'm stressed (I'm working on that!) or overly tired. 

Anyway - that's what I experienced...as always, confer with your doctor!

-Shari
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Dr. Scott did my surgeries - 12/29/03 and 1/5/04
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CagayanDeOro
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Re: involuntary movements, tics, tingling??
Reply #8 - Dec 5th, 2011 at 3:25am
 
Hi, I also have involuntary movement, etc.. My STA-MCA bypass was in 2006.  My doctors suspect Akathisia and Extrapyramidal Symptoms, due to lesions and scarring on my brain. It's also known as restless leg syndrome, but in me, it affects more than just my legs.  I also feel a heavy feeling come over me, mostly in my chest.  I get a rapid heartbeat and a deluge of melatonin-like rush feeling at the same time, and it's so scary. I can't stop moving sometimes.  It's so hard to explain to anyone that doesn't know what I'm going through.
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momof2
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Re: involuntary movements, tics, tingling??
Reply #9 - Jan 7th, 2012 at 11:44am
 
My daughter has had the tingling, twitching issues as well.  We have been to the dr several times for it as well.  She was put on topermax which is a new perscription for movement disorders.  It helped for a while but then seemed to make it worse so she quit taking it.  Not sure if there is any thing that will really make a difference other than less stress, good sleep and well balanced diet.
Jen's Mom
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bir
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Re: involuntary movements, tics, tingling??
Reply #10 - Jan 29th, 2012 at 8:29am
 
our son 10yrs also had developed involuntary movements after a ST/MCA done three yrs back on both sides. Our neurologist suggested cloba in Sep 2011. The involuntary movements in the right hand have diminished in a weeks time. The medication has not been stopped. It is ironic but after this he has suffered 3 TIAs which he never had over the past three years. After the 3rd TIA, doctors have recommended ecospirin 75 to be started. So now he is on Cloba and Ecospirin (blood thinner) since December 2011. Surprsingly after this medication started, the latest CT Scan show fresh infracts in the optical area and parietal lobe area which has affected his vision and coordination. Doctors are saying this is due to inadequate blood supply by the developing collatorals as moya moya is aprogressive disease. No further surgery and only medication and therapy has been recommended. Any feedback will be helpful as this is confusing us?
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mattsmom
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Re: involuntary movements, tics, tingling??
Reply #11 - Feb 20th, 2012 at 10:35pm
 
Yes!!  Matthew was diagnosed with choreaform movements in the spring of 2008.  They started in early May and lasted through early August.  They disappeared as mysteriously as they appeared.  Matthew had an EEG and an MRI, but nothing was ever determined.

Until now (with this post) I had always had a theory about the reason.  Matthew played catcher for his baseball team that year.  His left hand (which was on the affected side) was held up and stiff and working hard a greater portion of time than Matthew was used to.  I expected it return the following year when baseball season returned, however, they never have. 

Kim
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