Referred to a Movement Disorder Clinic

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Referred to a Movement Disorder Clinic

Postby LisaH » Fri Jul 21, 2017 6:27 pm

I had my follow-up visit with my neurologist today. He was baffled by the intermittent myoclonic jerks that I've had in my torso. He told me that if I wasn't taking gabapentin for the neuralgia, it would probably be much worse. He did a few tests on my arms and legs. One of the tests involved not letting him push my foot down and I was unable to do it. I also couldn't push his hand with my foot in the other direction, so apparently there's weakness somewhere. He's referring me to a university movement disorder clinic to (hopefully) find out what's going on. He also told me that he's holding off on doing an MRI of my brain or spine because they might need to do them at the movement disorder clinic. He's also not sure of what to make of my VEP and OCT results. Has anyone here been referred for a movement disorder? I've read that movement disorders are common with MS, so I'm not sure if my neurologist thinks I might have it or something unrelated. He doesn't strike me as the type who wants to commit to anything unless he's absolutely certain.

(edited to add this) ---> Also... my neurologist wants me to be seen at the movement disorder clinic and also have a follow-up exam with them.. and after that return to him for follow-up. As I was leaving his office, he said, "If they find out what it is, please let me know, will you?"
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Re: Referred to a Movement Disorder Clinic

Postby Snoopy » Sat Jul 22, 2017 6:36 am

I have never been referred for a movement disorder.

It appears your Neurologist is wanting to rule in/out possible other causes for your symptoms. Although there are aspects of movement disorders within the scope of MS there are other possibilities within the movement disorder category.

This link might be helpful for you...or not :smile:
http://www.aans.org/Patients/Neurosurgi ... -Disorders
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Sat Jul 22, 2017 6:57 pm

Thank you for the reply and the link, Snoopy. My neurologist thinks the daily muscle twitches I'm having are benign fasciculation syndrome. The occasional intense jerking in my torso (it's almost like a forced abdominal crunch) is something different and he's apparently hoping they'll figure it out at the movement disorder clinic.

I've also developed a new symptom over the past week. I was sitting on the couch and suddenly felt a buzzing on the bottom of my left foot that lasted a few seconds. It was like a cell phone on vibrate but much more subtle. Later in the day, I felt the same buzzing in my upper left arm in one spot (about the size of a quarter) which continued off and on for a few hours. During my appointment with the neurologist, it happened again on my lower left arm. I asked him about it and he said, "it's most likely just a nerve" but didn't elaborate at all. Any feedback on this would be appreciated.
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Re: Referred to a Movement Disorder Clinic

Postby NHE » Sat Jul 22, 2017 10:58 pm

LisaH wrote:Thank you for the reply and the link, Snoopy. My neurologist thinks the daily muscle twitches I'm having are benign fasciculation syndrome. The occasional intense jerking in my torso (it's almost like a forced abdominal crunch) is something different and he's apparently hoping they'll figure it out at the movement disorder clinic.

Are you taking one of the interferon beta drugs? I used to get a similar torso spasm as a side effect of Avonex. It was like my upper body would just suddenly lurch forward when I was sitting at my computer. It usually meant that it was time to take some ibuprofen to block Avonex's side effects. Taking 200 mg of ibuprofen would calm things down and stop the muscle spasm.
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Sun Jul 23, 2017 4:57 am

No, NHE, I'm only taking gabapentin. My neurologist said if I wasn't taking it, the benign fasciculation syndrome and myoclonic jerking would probably be much worse. I really hope he knows what he's talking about. It would be a waste of time to see a movement disorder specialist if my symptoms are a side effect of my medication. I've had palatal myoclonus (now called palatal tremor) for many years and he seems to think there's some possible connection. I've also had restless leg syndrome for years but the gabapentin controls that very well. Maybe since I have several movement disorders already, the neurologist thinks I might have others. :wink:
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Re: Referred to a Movement Disorder Clinic

Postby ebrownkirkland » Mon Jul 24, 2017 8:34 am

I have a friend who has hereditary spastic paraplegia. I don't know much about it but I do know that at first, the doctors though she had MS. It's pretty rare from what I understand.
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Tue Jul 25, 2017 6:07 pm

Thanks for the reply, ebrownkirkland. I'm actually concerned right now that my neurologist might suspect early-onset Parkinson's disease. After researching a bit, I discovered that one of the tests he did was for cogwheel rigidity. He didn't tell me what he was doing at the time or what his findings were. He came around his desk, began testing my arms and then proceeded to test my foot/ankle to see if I could keep him from pushing my foot down. I couldn't. He went back around his desk and told me he was referring me to a movement disorder clinic. I found out today that the earliest appointment is October 30th because this particular university movement disorder clinic stays very booked. They have me on the waiting list in case of a cancellation and I discovered that they also added "priority access" to my appointment (I saw it on the patient portal). I called to ask what that means and she explained that my appointment is to be considered a priority over routine follow-up appointments, etc. and she was surprised that it showed up on the portal for me to see. I did some reading and found out that one of the signs for Parkinson's is reduced arm swing. I have reduced arm swing in my right arm and hadn't given it a thought until I read that. I've also been walking much more slowly recently and that is certainly not typical for me. I'm used to everyone telling me to slow down. Does anyone know of any other reason for my neurologist to do a cogwheel rigidity test on me?
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Re: Referred to a Movement Disorder Clinic

Postby NHE » Tue Jul 25, 2017 11:09 pm

LisaH wrote:Thanks for the reply, ebrownkirkland. I'm actually concerned right now that my neurologist might suspect early-onset Parkinson's disease. After researching a bit, I discovered that one of the tests he did was for cogwheel rigidity. He didn't tell me what he was doing at the time or what his findings were. He came around his desk, began testing my arms and then proceeded to test my foot/ankle to see if I could keep him from pushing my foot down. I couldn't. He went back around his desk and told me he was referring me to a movement disorder clinic. I found out today that the earliest appointment is October 30th because this particular university movement disorder clinic stays very booked. They have me on the waiting list in case of a cancellation and I discovered that they also added "priority access" to my appointment (I saw it on the patient portal). I called to ask what that means and she explained that my appointment is to be considered a priority over routine follow-up appointments, etc. and she was surprised that it showed up on the portal for me to see. I did some reading and found out that one of the signs for Parkinson's is reduced arm swing. I have reduced arm swing in my right arm and hadn't given it a thought until I read that. I've also been walking much more slowly recently and that is certainly not typical for me. I'm used to everyone telling me to slow down. Does anyone know of any other reason for my neurologist to do a cogwheel rigidity test on me?

I can't answer your question, but you may wish to read the book 'The Brain's Way of Healing' by Dr. Norman Doidge. In particular, chapter 2 discusses one patient's experience using a special walking technique to minimize the impact of Parkinson's Disease.

reading-nook-f18/topic28843.html
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Wed Jul 26, 2017 6:31 am

Thanks for the link, NHE. I'm hoping someone will tell me that I'm just being paranoid. Today is my 47th birthday, by the way, but I'm walking like I'm an old woman. :sad:
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Re: Referred to a Movement Disorder Clinic

Postby NHE » Wed Jul 26, 2017 11:21 pm

LisaH wrote:Thanks for the link, NHE. I'm hoping someone will tell me that I'm just being paranoid. Today is my 47th birthday, by the way, but I'm walking like I'm an old woman. :sad:

An MS diagnosis is a process of elimination. I wouldn't get too worried about the cogwheel rigidity test unless it was positive. The book is still a good one to read. There are lots of helpful tips for folks with neurological issues. Unfortunately, some, like the cranial nerve noninvasive neuromodulation via electrical stimulation of the tongue, are not available outside of a clinical research trial. I suspect, though, that there might be a few PwMS out there trying to build their own stimulator units.
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Thu Jul 27, 2017 6:55 am

Thanks NHE. I'm not exactly worried at this point... just very anxious to know something. I spoke with my neurologist's office a few minutes ago and they're practically refusing to give me information. Normally, they'll read me what was noted on my previous visit (with the PA that I was seeing). I saw the neurologist on this most recent visit and when I checked out, I asked as I always do to have my visit summary mailed to me when it's completed. The PA or doctor completes the report after, so it isn't available immediately. The lady I spoke with today told me that it was put in the mail today. I asked her to pull it up and read me what tests the doctor had done and what the findings were. The doctor's assistant has never hesitated to read me the notes over the phone. Today was very different! After she pulled up my visit summary, she told me that she would send a message to the doctor and have him contact me. He's at the hospital today instead of in the office. It seems obvious (to me at least) that the doctor must have noted something abnormal or they wouldn't have hesitated to tell me. :confused:
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Sat Jul 29, 2017 1:04 pm

I was able to get a video today of the jerking/spasm movements I've been having. It's not as intense as some that I've had... but it should be useful to show when I go to the movement disorder center. Here's the link to it if anyone is willing to take a guess. Thanks!

https://vimeo.com/227563628
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Mon Jul 31, 2017 6:04 am

I guess no replies could mean that nobody has watched my video or maybe nobody has any feedback about it. I'd settle for any opinion at this point. The video is less than 2 minutes long, so if someone would please take the time I would really appreciate it. Does it look like spasms that I'm having or something else? Thanks in advance for any feedback.
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Re: Referred to a Movement Disorder Clinic

Postby LisaH » Mon Jul 31, 2017 11:52 am

I was sent a private message by someone saying they were unable to view the video in their browser. If anyone else has had the same issue, please let me know. Thanks!
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