strange symptons

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strange symptons

Postby frank1 » Fri Mar 04, 2011 10:11 pm

this is my first visit. i am a 68yo male diagnosed with idyopathic syringomyelia 10 years ago. i am wondering if anyone has experienced the following symptons. exireme spasms over your whole body ahd you shake and jerk violently. i have these several times a day, including waking me up at night. i have no equilibrium for long periods of time.i have extreme hot flashes and get soaked in sweat and of course the constant pain. i am stuck with kaiser and they swear their is no treatment for a syeinx. i am trying to get into a study at nih. any help that anyone can give would be great. thanks!!!!!!!!!!!
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Re: strange symptons

Postby Regina5577 » Sun Mar 06, 2011 1:24 pm

I don't have spasms all over just lower back and into legs. These come mostly in late afternoon & evening. I recently found a neurosurgeon at johns Hopkins who I love. Check your symptoms against the condition called dystonia.(Not sure about spelling). Ask your doctor too. Good luck. Baclofen, zanaflex type drugs have helped.
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Re: strange symptons

Postby lady 59 » Sun Mar 06, 2011 2:12 pm

Welcome, I also have spasms but not as bad as you. I've tried a few different things, right now I'm taking Zanafle, it does help some. I started at a low dosage and my NL upped it slowly, things are better than they were. Don't have the hot flashs either.
Good luck to you and keep in touch on here you'll learn alot and get some good feedback.
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Re: strange symptons

Postby Harrybaby666 » Tue Mar 15, 2011 9:21 am

frank1 wrote:this is my first visit. i am a 68yo male diagnosed with idyopathic syringomyelia 10 years ago. i am wondering if anyone has experienced the following symptons. exireme spasms over your whole body ahd you shake and jerk violently. i have these several times a day, including waking me up at night. i have no equilibrium for long periods of time.i have extreme hot flashes and get soaked in sweat and of course the constant pain. i am stuck with kaiser and they swear their is no treatment for a syeinx. i am trying to get into a study at nih. any help that anyone can give would be great. thanks!!!!!!!!!!!


Hi Frank,

I was just diagnosed with SM in December of 2010 and like you, I have muscle spasms.....some of which lock up my left ankle to the point of my not being able to move it at all....and these other symptoms, the sweating, the lack of equallibrium and the hot flashes I also have which I will be addressing with my neurologist as soon as possible....but I wanted to let you know that I have these as well....

Dr. Warach, my neurologist put me on both Neurontin and a muscle relaxant named Robaxin and they really have helped, although I think the neurontin will have to be increased.....but the Robaxin seems to be helping to keep me as spasm free as possible.

I hope we both can get to feeling better and deal with this dreaded illness as gracefully as possible....Harold aka Harrybaby
I may not be able to kneel to pray, but I can still bow my head to give thanks and to pray.....
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Re: strange symptons

Postby tennesseewalker » Tue Mar 15, 2011 11:23 am

Hi frank1,

Ask your doc for at least something that will relax your painful muscle spasms. There are several to choose from. I take Soma and Baclofen every day and they have helped greatly.

If you can find a good NL who will listen to you and believe you, have him write a letter to your Kaiser doc. Once they have another doctor's word for it, they usually turn around and are willing to try to help you.

I don't know why this is, but you have to complain about the same symptom 3 different times before they take you seriously and offer treatment. Maybe they need to see that the symptom is not transient.

Be sure he knows that you don't expect a cure, just a little help with symptom relief. There is so much litigation out there that doctors are hesitant to treat conditions that are not likely to improve. Good luck and keep us posted on how you're doing.

Mary
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Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: strange symptons

Postby syrinx48 » Tue Mar 15, 2011 12:30 pm

Hi Frank,

I have the same symptoms. I have them as long as I was diagnosed with SM. My SM runs from C4 to T11. I have medication such as a musscle relaxation rivotril, and natriumvalproine chrono, a anti epilepticum. I sleep well now at night, if not for my neurogenic overactive bladder, which keeps me awake by going to the toilet 4 to 5 times a night.

Annemarie
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Re: strange symptons

Postby karenb » Mon May 02, 2011 4:49 pm

Hi Frank,

My Syrinx is T6-T9, and my symptoms are similar to yours, except that in my case it's my legs that do all the shaking and jerking about (probably due to the location of my syrinx). My NL prescribed Klonopin (generic: Clonazepam) - my current dosage is 2 mg per day at bedtime (it makes me really sleepy). It really seems to help with the jerking about that was waking me up at night, and carries over into the day enough that I only have the jerking and shaking when I'm extremely tired or stressed or have over-exerted my legs.

My NL initially prescribed Baclofen, a muscle relaxant, but it didn't seem to do anything except make me really sleepy.

Karen
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Re: strange symptons

Postby amy1021 » Tue May 03, 2011 9:19 am

Hi Frank,

I'm 25 years old and I was diagnosed with CM a few months ago. However, for about a year or so I've also been having muscle spasms. They usually occur when I am lying down, usually when my body is at rest (anyone know why??). My spasms aren't painful though, and probably not as bad as yours. They are more annoying than anythign else. As for the hot flashes, I've been having extreme changes in my body temp as well (again, started happening a year or so ago). One minute I'm freezing, and the next I'm sweating immensely! These symptoms are definately characteristic of CM I think...not sure if they have any thing to do with SM, and I'm hoping not as I have yet to get my spine MRI. My neuro seems to think there are no syrinx's, but I guess we'll find out.

I hope you find some relief from your sypmtoms. Good luck!

Amy
Chiari 1, 7mm; Temporal Lobe Epilepsy
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Re: strange symptons

Postby karenb » Wed May 04, 2011 6:06 pm

Amy,

I suspect that the symptoms you're describing are actually more characteristic of how the syrinx within the spinal cord or at the base of the brain interrupts the message flow from the brain to the body.

One of my first symptoms was that certain muscle groups locked in permanent contractions (the first group has been locked for 13 years). The explanation (14 years ago, mind you) was that I muyst have some sort of "nerve entrapment". Little did anyone realize that the "entrapment" was actually the pressure of the syrinx within my spinal cord.

In my case, the syrinx interrupts the message flow so that my lower body does not sense or respond to hot/cold the same way as my upper body. For example, I may be in a 90 degree room, sweating profusely from the waist up, and freezing (even with 4 blankets!) from the waiste down.

My NL explained to me that the reason the spasms or jerking is more common at night is because night/sleep is the normal time when the body metabolizes the lactic acid produced by muscle activity and when the muscles relax and recover. He said that, most likely, the syrinx disrupts the message flow between my brain & legs needed for this to occur - as a result, my legs find their own way to discharge energy and relax.

I hope this makes some kind of sense, even though my experience is with a thoracic syrinx and not with Chiari.

Karen
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Re: strange symptons

Postby Syrinx810 » Thu Feb 23, 2012 3:07 pm

Hi frank, I have a cervical syrinx c4-c7 and disc issues, but I have RLS, symptoms developed after a trauma. Initially gabapentin, now lyrica and zanaflex. Helps alot. I also get this pulsating in my face and neck, like a heart beat that's trembles. After 3 years I'm still looking for diagnosis.
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Re: strange symptons

Postby sherryhelms » Tue May 22, 2012 8:11 pm

I have symptoms that led me to a cardiologist today... had a stress test and heart seems fine.
Symptoms the last couple of weeks have been upper middle back pain (elephant on my back). Pains goes through to my chest and then up to my jaws, ears and the side of my head. These occur in "spells" and I am not doing anything special when this happens. At this same time, I constantly have shoulder, shoulder blade, neck, arm pain from what I think is a pinched nerve. I do have a chiari. 3 syrinx (one in cervical spine and 2 in thoracic spine). Disc bulges from C4 to C7.
Do chiaris and syrinxs cause such pains?
Also, I never have a hunger pain. I have to think about what I might be able to eat.
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Re: strange symptons

Postby creken85 » Tue May 29, 2012 7:38 pm

Frank,

I get spasms and jerks as well. I have an idiopathic syrinx from about t7-t11. Some days they're barely noticeable. Others, i get strange twitches and spasms all over my body in random places with no apparent rhyme or reason. I also have larger "jerks" which jolt me awake almost every night several times a night. They seem to be worse if I'm really active during the day.

Chris
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Re: strange symptons

Postby JeffinMI77 » Tue Jun 05, 2012 5:38 pm

Wow glad to see i'm not crazy with the hot flashes..I only have twitches and spasms. I do not have CM. So I agree with Karen, these symptoms seem to be more typical with SM then CM.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: strange symptons

Postby alpowers01 » Mon Aug 13, 2012 2:54 pm

I'm a 73 year-old male with a C-1 malformation and a syrinx (C2-3 to T4). So far, I've only been monitored. However, my symptoms have been progressing faster over the past 10 years after being very stable for the prior 30 years since the diagnosis. They include the burning shawl pattern over the torso, a hot pepper sensation within my mouth, slight burning around my lips (Hot lips? Hmmm.) I have bilateral numbness midthigh to toes that results in a sensation such as walking on sponges. The lack of sensory feedback from my feet results in balance issues when in a dark room (no visual clues). Lately, I've also found that I stagger when walking if I turn my head to the right or left while in motion.

I also have the night sweats, body-jerking that wakes me up, and occasional leg cramps when resting that others have mentioned. [b]Here I have what I hope will be a Godsend tip! To relieve those terrible cramps, simply wrap the affected area in a heating pad turned on high. Voila! They go away quickly and stay away... until another night. This works beautifully for me and, hopefully, it will for others. IMPORTANT: I caution that you weigh this treatment against the possibility of cramping due to a circulatory issue, such as a clot which could be mobilized by heat treatment. Heat application is contraindicated in such cases. In my case, I do attribute the cramping to deficiencies involving my spinal nerves and have no reason to suspect a clot. If you're in doubt about using heat, check with your physician first.

If heat treatment relieves cramping, it's the way to go! We all know medication is to be avoided insofar as possible.
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Re: strange symptons

Postby gncrzy3 » Thu Aug 16, 2012 9:07 pm

I get severe spasms and spacicity. They are worse
When I am over tired, do too much or if I am sick.
When I am sick, I can barely function at all. I
Have more trouble with balance, moving, and my
Pain increases. The dr started me on baclofen for that, then
Switched me to Valium 3 times a day. ( believe it or not
I take it for the spasms) while it did help... Now
I am going for an eval for an intrathecal baclofen pump
Eval due to the spacicity and severe spasms. Good luck
To you! If there is anything I can answer for you feel free
To ask or pm me.
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