Newbie

Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Moderator: pmaxwell

Newbie

Postby spinaltwitch » Tue Jan 31, 2012 3:18 pm

Hi,
Realized I forgot to introduce myself.
Got the dx last Tuesday of a syrinx from t2-t9 that is potentially causing spinal myoclonus (which is involuntary muscle movements (left hand grabs a hold of right arm; head bangs etc)). Doctor has me on 800mg of Tegretol and I'm on Keppra and the dosage may increase to 1500 mg daily.
I had problems with muscle movements in the past, they even found the syrinx, but the doctors ruled it an incidental finding and that the movements were more then likely psychosomatic >.<. GP put me on Tegretol and the movements stopped. Went off Tegretol over a year ago (April 2010) and was fine until October 2011. Went roller skating and fell and within a week I was twitching. GP told me that he thought it was stress and that he thought it was stress induced the whole time (Not what he told me the first time :evil: ). Upped the Tegretol to 600 and said to see him in 6 weeks. Saw him again and he told me I could go to the neurologist if I thought it would make me feel better. Anyway...long story short...got an MRI and EEG and the neurologist said spinal myoclonus most likely due to the syrinx (He mentioned seeing a few case studies about a link between the two). Was ready to hug the man for not saying that it was "a physical manifestation of the stress in my life". I see him again in March to see how I'm responding to the new meds.
spinaltwitch
 
Posts: 8
Joined: Fri Jan 27, 2012 3:07 pm

Re: Newbie

Postby karenb » Tue Jan 31, 2012 11:40 pm

Hi Newbie!

Welcome to the club nobody wants to be part of! I hope you've had a decent day.

I've experienced myoclonus since shortly before my dx. They think brief "twitches" might be why I tend to collapse. The doctors have seen episodes which appear more like full-blown seizures, and they tell me it's not real -- I wish one of them would go through it and then explain to me how it's not real!

Good luck! I hope you find what you're looking for here.

Karen
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM

Re: Newbie

Postby spinaltwitch » Wed Feb 01, 2012 1:32 am

karenb wrote:Hi Newbie!

Welcome to the club nobody wants to be part of! I hope you've had a decent day.

I've experienced myoclonus since shortly before my dx. They think brief "twitches" might be why I tend to collapse. The doctors have seen episodes which appear more like full-blown seizures, and they tell me it's not real -- I wish one of them would go through it and then explain to me how it's not real!

Good luck! I hope you find what you're looking for here.

Karen


You collapse too? I've fallen on the stairs a few times. I've had full blown seizure like episodes as well, but luckily those have stopped with Tegretol. Honestly didn't hold out much hope that this neuro would say anything other then stress, but I'm glad I went and got a new perspective/new dx.
spinaltwitch
 
Posts: 8
Joined: Fri Jan 27, 2012 3:07 pm

Re: Newbie

Postby karenb » Wed Feb 01, 2012 11:24 pm

Hello again, Newbie!

spinaltwitch wrote:You collapse too? I've fallen on the stairs a few times.


I started to notice collapsing about 7 years after I had the first foot pain & bone dislocation. At that time, they diagnosed it as core muscle atrophy (loose translation: "butt atrophy") and treated me accordingly with physical therapy.

I regained some of the strength, but then it started again about 3 years later. I had used a cane for 9-10 years, so I didn't really notice. My cousin was the first one, and he noticed because I managed to hold myself upright on his car.

spinaltwitch wrote:I've had full blown seizure like episodes as well, but luckily those have stopped with Tegretol. Honestly didn't hold out much hope that this neuro would say anything other then stress, but I'm glad I went and got a new perspective/new dx.


On 8/25/07, I started experiencing something that seemed more like seizures, about every 10-15 minutes for several hours. It did a lot more than scare me. Then, on 8/28/07, I found out that I had Syringomyelia, and the jerks I was experiencing were myoclonus. I continued to experience myoclonus until I was on a sufficient dose of Klonopin to deal with it.

The seizure-like experiences are primarily lower-body. My upper body (arms) gets involved to keep me in place. Generally, I can trace a seizure-like event to a specific cause - most frequently "overdoing it", but also fatigue, stress, driving too much, and even getting dehydrated or experiencing low blood sugar.

Several physicians have seen it, and say that it doesn't present like anything neurological that they've ever experienced, and they wonder if it's something more complex (e.g. brain/spinal cord/maybe_something_else?). My guess is that it's more along the above lines. I notice it particularly if I've put my muscles under a lot of stress, and they are trying to relax. They seem to go into this seizure-like mode instead of relaxing. Afterward, there's the most incredible sensation of relaxation and relief.

Anywho, please keep me posted. Maybe together we can find an answer!

Karen
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM

Re: Newbie

Postby spinaltwitch » Mon Feb 06, 2012 2:45 pm

Hi,
Thank you everyone.
Just wondering: has anyone had their symptoms exacerbate after a fall? My boyfriend and I were rollerskating and I landed on my tailbone and within a week the twitching and everything had started up. The doctors don't think it's related, but it seems pretty coincidental to me.
Thanks for the help :)
spinaltwitch
 
Posts: 8
Joined: Fri Jan 27, 2012 3:07 pm

Re: Newbie

Postby karenb » Mon Feb 06, 2012 10:20 pm

To be honest, I don't know if falling exacerbated my condition, or if my condition increased my likelihood of falling.

I still vividly remember one fall - I fell flat with about 40 lbs of "work stuff" landing on my left hip in December, 2006 - it seems that I have never been quite the same since.

The problem is that nobody knows whether the falling was due to SM, or if the falls exacerbated my SM... nobody even knew I had SM for another 8 months or so.

Karen
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM

Re: Newbie

Postby spinaltwitch » Mon Feb 06, 2012 11:59 pm

karenb wrote:To be honest, I don't know if falling exacerbated my condition, or if my condition increased my likelihood of falling.

I still vividly remember one fall - I fell flat with about 40 lbs of "work stuff" landing on my left hip in December, 2006 - it seems that I have never been quite the same since.

The problem is that nobody knows whether the falling was due to SM, or if the falls exacerbated my SM... nobody even knew I had SM for another 8 months or so.

Karen

Hi,
At least in my case, I had the syrinx before the fall. The MRI of the Thoracic region didn't indicate any new problems, but it still seemed to be coincidental that it occurred shortly after the roller skating fall.
spinaltwitch
 
Posts: 8
Joined: Fri Jan 27, 2012 3:07 pm

Re: Newbie

Postby karenb » Tue Feb 07, 2012 7:55 pm

Hi again, Newbie!

spinaltwitch wrote:At least in my case, I had the syrinx before the fall.


The most frustrating thing is that I'll never know when I had the syrinx. My initial symptom was constant stabbing pain in my foot because my peroneal muscle was in a strong enough spasm to dislocate the cuboid bone in my left foot! I had at least a hundred dislocations before my foot was stabilized with orthopedic shoes.

The podiatrist was astute enough to realize fairly quickly that we were dealing with a neurological problem. The neurologists, however, kept pursuing dead-ends. (I was living in central New Jersey at the time, and was being seen by neurologists at the School of Medicine and Dentistry and also by specialists in NYC and Philadelphia. All in all, it took 10 years and a cross-country move to southern New Mexico before the first thoracic MRI was performed.

That confirmed that I had SM, but we have no way to know how long I'd had it or whether it had grown worse over time. The basic assumption is that I had had it at least 10 years, but there's no way to know.

Karen
karenb
 
Posts: 645
Joined: Mon May 03, 2010 9:41 pm
Location: Las Cruces, NM


Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 7 guests

cron