Aa
change is good, right?
OK, so I've had left foot spasms for about a year. Over the spring & summer they crept up over my ankle to the lower leg, then to whole leg, hip to toes - great fun! Somewhere around the same time period, they snuck over to my right foot too. Left arm joined in too, as well as left side of my neck, my abdominal wall (lots of surgeries there, mesh replaces part of wall, so weak area) and various other muscles I didn't even know I had.
About 2:30 this morning, I had my feet up on an ottoman playing online poker (couldn't sleep; had napped half the day). I got a knee to toes spasm that lasted 20 minutes. Apparently I must have been crying out pretty loud, because my DH several rooms away who could sleep through an air raid came running in. He could see the muscle all balled up and toes splayed out everywhere.
My right leg has NEVER spasmed. It's been crampy and twtitchy for quite a while, but never spasmed. For quite a while after it was done, it twitched every few seconds really hard. Today it feels like a rock. Probably a stupid question, but why does it keep "spreading" to new body parts? Remember, I have no Dx. Feel like none in sight either, but I hope I'm wrong, with this latest round of testing.
Penn
About 2:30 this morning, I had my feet up on an ottoman playing online poker (couldn't sleep; had napped half the day). I got a knee to toes spasm that lasted 20 minutes. Apparently I must have been crying out pretty loud, because my DH several rooms away who could sleep through an air raid came running in. He could see the muscle all balled up and toes splayed out everywhere.
My right leg has NEVER spasmed. It's been crampy and twtitchy for quite a while, but never spasmed. For quite a while after it was done, it twitched every few seconds really hard. Today it feels like a rock. Probably a stupid question, but why does it keep "spreading" to new body parts? Remember, I have no Dx. Feel like none in sight either, but I hope I'm wrong, with this latest round of testing.
Penn
Heehee It's ok, like I said I've accepted it now. Hmmm... I'll get back to you on the names hehe Mind you, you'd need to fly over to Australia to mame them :-)
This should be one heck of a par-tay! At least a 2 rootbeer kegger! I can't wait - need a good party... or do I need a good potty? Oh well, no matter...gotta find my dancin' shoes. some lessons might help too.
Thanks for always keeping my spirits up!
MEl - so sorry to hear they gave your scholarship away. Is there someone we can mame for you? T-Lynn amd Heather are taking orders, LOL=)
Penn
Thanks for always keeping my spirits up!
MEl - so sorry to hear they gave your scholarship away. Is there someone we can mame for you? T-Lynn amd Heather are taking orders, LOL=)
Penn
Hey there!
Awww hun I have some bad news for you - I couldn't get insurance to go on that trip and had to pull out! I then later found out that I was covered under our state education department but they had already filled my spot with someone else! :-( I was so upset, I can't even describe! But I've accepted it now - I have to say that that is the most impressive thing about having whatever it is that I have; my brain just seems to forget things so quickly and also my mood about certain things changes in a second. Like, one minute I'm totally devestated about something and the next minute I'm fine with it and laughing, one minute I want to do something so badly it's not funny, the next minute I couldn't care less if I never did it. Hehe magic!
Well I went to my Dr two days after it happened - I didn't actually go into the chair straight away, I didn't even go to the ER and I KNOW, I should have (oops). I somehow got through work on Wednesday - soooo shouldn't have gone and I knew it, was walking around "like an old crippled woman" (charming, thanks colleagues hehe) - and got in to see her the next day. She kinda went *shrug*, "I don't know"... ummm, that's helpful!!! She said that I didn't have muscle weakness coz I could still shuffle along a little bit. I'm sorry, but if my legs are siezing up almost to the point of paralysis and it isn't weakness, what the hell is it?!!
*breathe* hehehe
Oh geez, I just read your post again - of course, you did know about me not going on the scholarship! I am so silly hehe Come on eyes, work! (and a bit of memory function wouldn't go astray either) Ahhh good point... I so get you now... you're right; you're totally right. It worked out exactly how it should work out - maybe that's why I've accepted it and moved on already??
Woohoo! I'm about to go and get my spine x-rayed, how fun! The chiro wants a full spine, yay.
Mel :-)
PS - I'll bump up my story if you haven't read it.
Awww hun I have some bad news for you - I couldn't get insurance to go on that trip and had to pull out! I then later found out that I was covered under our state education department but they had already filled my spot with someone else! :-( I was so upset, I can't even describe! But I've accepted it now - I have to say that that is the most impressive thing about having whatever it is that I have; my brain just seems to forget things so quickly and also my mood about certain things changes in a second. Like, one minute I'm totally devestated about something and the next minute I'm fine with it and laughing, one minute I want to do something so badly it's not funny, the next minute I couldn't care less if I never did it. Hehe magic!
Well I went to my Dr two days after it happened - I didn't actually go into the chair straight away, I didn't even go to the ER and I KNOW, I should have (oops). I somehow got through work on Wednesday - soooo shouldn't have gone and I knew it, was walking around "like an old crippled woman" (charming, thanks colleagues hehe) - and got in to see her the next day. She kinda went *shrug*, "I don't know"... ummm, that's helpful!!! She said that I didn't have muscle weakness coz I could still shuffle along a little bit. I'm sorry, but if my legs are siezing up almost to the point of paralysis and it isn't weakness, what the hell is it?!!
*breathe* hehehe
Oh geez, I just read your post again - of course, you did know about me not going on the scholarship! I am so silly hehe Come on eyes, work! (and a bit of memory function wouldn't go astray either) Ahhh good point... I so get you now... you're right; you're totally right. It worked out exactly how it should work out - maybe that's why I've accepted it and moved on already??
Woohoo! I'm about to go and get my spine x-rayed, how fun! The chiro wants a full spine, yay.
Mel :-)
PS - I'll bump up my story if you haven't read it.
Oh, my GOODNESS!
Well, Mel! We are going to make you the queen of this ball!
I'm so sorry! What did your doctor say?! I'm sure you have posted about it, but things move so quickly here. I didn't catch it. I will look around to see if your story is up. OMG!!
I have had paralysis before, and I know it just is the WORST! HATE it! I'm so sorry. What is happeneing on this forum? I've heard from so many people that they've been having trouble walking? Tell me what your doc said.
I hate to even bring this up, but you wouldn't be able to come to our dance party if you were away on your scholarship trip, would you? Would you still be on it when your walking difficulties popped up? I wonder if this is why it just didn't work out this year.....
Well, put on some music, I'll look for your story, add you to my prayer list and .....partaaaay!
Feel better and better!
Twinkle Toes*
Well, Mel! We are going to make you the queen of this ball!
I'm so sorry! What did your doctor say?! I'm sure you have posted about it, but things move so quickly here. I didn't catch it. I will look around to see if your story is up. OMG!!
I have had paralysis before, and I know it just is the WORST! HATE it! I'm so sorry. What is happeneing on this forum? I've heard from so many people that they've been having trouble walking? Tell me what your doc said.
I hate to even bring this up, but you wouldn't be able to come to our dance party if you were away on your scholarship trip, would you? Would you still be on it when your walking difficulties popped up? I wonder if this is why it just didn't work out this year.....
Well, put on some music, I'll look for your story, add you to my prayer list and .....partaaaay!
Feel better and better!
Twinkle Toes*
Well I never miss a good party! :-) I had a major attack on Tuesday night of a mixture of spasm and intense bone/muscle pain. It left me with walking problems and in a wheelchair. Boo!
PAAAAAAAAAAAAAAAARTAY!
Mel :-)
PAAAAAAAAAAAAAAAARTAY!
Mel :-)
Did someone say 'Party?' Oh, yeah, girls! (And any guys lurking around, of course) If there's going to be a Spasmic Party, I will be there! I thought I heard my name. I had a 'cramp' last night in my right leg (my usual, but both my legs do the Spasmic Dance) that woke me out of a pretty good sleep. Mt toes were curled under tightly and I had to massage my fooot to release them. Usually my toes splay, like Penn said. OH, did it hurt!
You know -- it's interesting that you bring up the anti-seizure medication, Heather. I have just reduced mine over the last several weeks, and my cramps have gotten progressivley worse. I went from 200mg of Topamax twice a day down to 50mg twice a day. From 400 to 100. And lots of cramping. I have posted about it, don't know if you saw it. I have been pretty miserable with it. That's pretty interesting. I have an appointment on Tuesday with my endocrinologist, so I'll ask him about it. I'm sure he won't make the connection. If I bring it up, I sound like a know-it-all, and he gets suspicious, maybe. I hate that!
Anyway, count me in for the partaaaaay!
Feel better, Penn. And everyone!
Zilla*
You know -- it's interesting that you bring up the anti-seizure medication, Heather. I have just reduced mine over the last several weeks, and my cramps have gotten progressivley worse. I went from 200mg of Topamax twice a day down to 50mg twice a day. From 400 to 100. And lots of cramping. I have posted about it, don't know if you saw it. I have been pretty miserable with it. That's pretty interesting. I have an appointment on Tuesday with my endocrinologist, so I'll ask him about it. I'm sure he won't make the connection. If I bring it up, I sound like a know-it-all, and he gets suspicious, maybe. I hate that!
Anyway, count me in for the partaaaaay!
Feel better, Penn. And everyone!
Zilla*
Can I join the hokey pokey party! I am 45 years old and living in Alberta, Canada and being "too old" but from Cattle Country I think I might fit into your little party! I am on Tegretol and have been for years as I presented with Grand Mal Seizures when I was diagnosed with MS. I have been in "remission" since 1997 and now I am on Neurontin which is supposedly for my Raeder's Syndrome but one or the other drug did help slow down my nightly "dances with screaming" as my husband calls it ha ha!
Ya"ll Crack Me UP!!!! I'm not spasmic, but I am 42!!! and love a good party!!! Growing up in Texas I definantly can teach ya'll how to do the hokey pokey!!! (LOL)
If 42 is to old to have your first "attack", then someone forgot to inform my body of that little fact. Although when I think back over the past, I'm sure I have had several other attacks over the years just nothing as major as this one has been. I think (and sometimes that is very dangerous) I probaby have had "whatever this is" for the past 15 years or so, just milder "attacks" affecting just single parts of the body. Such as....TMJ, carpel tunnel, severe bout of acid reflux, eye twitch that comes and goes, restless leg syndrome, cronic fatigue.
I read that in the autopsies that showed a person had MS, 40% of those people had no idea they had the disease. So to me, Its not unreal that someone could have it for years and not know then suddenly have more severe symptoms show up over the age of 40. I have had perfect vision all my life then at 41 had to have glasses. My eye doctor said it was due to that majical age of 40!!! Now I know I need to go back and have him do a more intense exam.
Lisa
If 42 is to old to have your first "attack", then someone forgot to inform my body of that little fact. Although when I think back over the past, I'm sure I have had several other attacks over the years just nothing as major as this one has been. I think (and sometimes that is very dangerous) I probaby have had "whatever this is" for the past 15 years or so, just milder "attacks" affecting just single parts of the body. Such as....TMJ, carpel tunnel, severe bout of acid reflux, eye twitch that comes and goes, restless leg syndrome, cronic fatigue.
I read that in the autopsies that showed a person had MS, 40% of those people had no idea they had the disease. So to me, Its not unreal that someone could have it for years and not know then suddenly have more severe symptoms show up over the age of 40. I have had perfect vision all my life then at 41 had to have glasses. My eye doctor said it was due to that majical age of 40!!! Now I know I need to go back and have him do a more intense exam.
Lisa
We could have a kickin' "Spaze" party around here - there are so many of us! No effort needed for dancin - just let the limbs fly where they may;)
T-lynn - I am on baclofen 4x a day and did try ativan - can't remember why they took me off that. My vision is slowly worsening. Had to pay out of pocket for new glasses coz less than a year after I got glasses for the first time in my life (@ 40+), they were not strong enough anymore. In same spot now. Waiting till January when my 2 years is up and insurance will cover it. No docs seemed interested in that tidbit. I really would like to meet a doc who has a clue. Now THAT would be a party! The doc who told m eI am tooold for MS is the CCF specialist I traveled several hours to see. Same visit, same room, same exam, the other doc said MS. He said no coz I'm too old and the MRI done a month into my symptoms was clear. So was one of my sister's - you should see hers now! She was Dx'd by spinal.
Thanks for the offers of physical violence against my doc! I get first crack though!
Penn
T-lynn - I am on baclofen 4x a day and did try ativan - can't remember why they took me off that. My vision is slowly worsening. Had to pay out of pocket for new glasses coz less than a year after I got glasses for the first time in my life (@ 40+), they were not strong enough anymore. In same spot now. Waiting till January when my 2 years is up and insurance will cover it. No docs seemed interested in that tidbit. I really would like to meet a doc who has a clue. Now THAT would be a party! The doc who told m eI am tooold for MS is the CCF specialist I traveled several hours to see. Same visit, same room, same exam, the other doc said MS. He said no coz I'm too old and the MRI done a month into my symptoms was clear. So was one of my sister's - you should see hers now! She was Dx'd by spinal.
Thanks for the offers of physical violence against my doc! I get first crack though!
Penn
I was DX'd right before I turned 41,Rebif was my birthday gift.
My eye Dr at that time told me that I needed bifocals because I hit that magical age.Now he has changed his attitude because my up close vision is that of a 70 year old.NO **** I have occipital atrophy form this darn disease.
That DR needs hit upside his head with one of his medical books.
T
My eye Dr at that time told me that I needed bifocals because I hit that magical age.Now he has changed his attitude because my up close vision is that of a 70 year old.NO **** I have occipital atrophy form this darn disease.
That DR needs hit upside his head with one of his medical books.
T
A "Spaze" party....perfect! Having you and Zilla there, would make it one fun party. I still think we should learn the "Hookey Pokey" dance..... would give our goofy muscles something to actually do, besides HURT US....dern things!
Thought I would let you know that I was DIAGNOSED with MS at age 42. That's when I had my first "attack." So pooey to that doctor.....he's an idiot.
Heather just hit the nail on the head.My neuro has no explanation for the migrating muscle spasms,but girl I know how bad they hurt and I take daily meds thats suppose to stop them,and they don't.Like Heather stated valium does help,but that can be addicting.I take valium just to slow them down.
You really need to call your DR tomorrow,there's no need to be in that much pain when theres meds available,baclofen,zanaflex,flexeril,valium and ativan.
Penn,try to get something to help releive these spasms.
T
You really need to call your DR tomorrow,there's no need to be in that much pain when theres meds available,baclofen,zanaflex,flexeril,valium and ativan.
Penn,try to get something to help releive these spasms.
T
The docs tried seizure meds with me and I really had a bad reaction. I think I'm sensitive to meds. Never wanted to take any. I take baclofen and quinine right now.
I try not to assume this is MS. There have been SOOOO many things ruled out already, and both ny sisters have it. The doc @ CCF told me 42 is to old. Hoping the spinal tap that caused me to have such fun this week will show something - anything. Just want to know what it is I'm fighting, you know? It seems to be moving in a pattern, feet first, then leg, then arm, then other foot, leg... arm next?? Not sure where in the mix the neck and others started. I have an endocrinology consult, ordered by CCF to rule any funky thyroid issues I'm not already aware of (whole family has hypothyroid). But my thyroid is tested 3 times a year - more this year. Don't really have a neuro right now. CCF neuro who thinks I'm too old will let me know what the tests he ordered show. Not waiting that long though; am requesting copies from the hospital where I had them done. Still have an EEG too, to rule out any unusual type of seizure activity.
Next time I have a spasm party, I will be sure to invite you, and Zilla and all the other "spazes" LOL!
Thanks
Penn
I try not to assume this is MS. There have been SOOOO many things ruled out already, and both ny sisters have it. The doc @ CCF told me 42 is to old. Hoping the spinal tap that caused me to have such fun this week will show something - anything. Just want to know what it is I'm fighting, you know? It seems to be moving in a pattern, feet first, then leg, then arm, then other foot, leg... arm next?? Not sure where in the mix the neck and others started. I have an endocrinology consult, ordered by CCF to rule any funky thyroid issues I'm not already aware of (whole family has hypothyroid). But my thyroid is tested 3 times a year - more this year. Don't really have a neuro right now. CCF neuro who thinks I'm too old will let me know what the tests he ordered show. Not waiting that long though; am requesting copies from the hospital where I had them done. Still have an EEG too, to rule out any unusual type of seizure activity.
Next time I have a spasm party, I will be sure to invite you, and Zilla and all the other "spazes" LOL!
Thanks
Penn
Ph Penn, my gosh girl. I feel for you. Having experienced these kinds of spasms before and screamed out in pain....I sympatheize (sp) with you. Now as to the spreading issue. It is NOT unsual at all for spasms to hit in various places, like some random game of 'tag.' This happens to me all the time, in or out of a flair-up. It's like my legs have a mind of their own.
Boy does this sound like MS...BIG TIME! I know that you don't have a diagnosis, but to this lady, this all sounds so familiar. Why the spasms seem to hit in all kinds of different places, is a mystery to the doctor's. They have never been able to explain that one to me.
Since your body is doing it's own cha-cha...I hope that you have an appointment with your doctor soon. There are many drugs on the market for these kinds of spasms, but truthfully, my doctor says that nothing but Valium will slow them down. I do not take Valium and do not push it's use. Hey, I take enough stuff that I could become addicted to, I don't need something else. But it's worth asking your doctor about.
Neuro's think what you describe is something similiar to a "muscle seizure" and often prescribe anti-seizure medication for it. I have never found them to work for me. The Neuro says if we could see inside the brain at the moment that these are happening we would see little sparks of action firing at various places in the brain at once. At least that's the way he describes it to me. It's almost like the brain is saying, "Hey muscle guys, let's have a party. Put your left foot in, put your right foot out, do the Hookey-Pokey and shake it all about..."
Please know that what you are describing sounds oh so common to me. Hope that you make a phone call to your doctor on Monday.
And look if you are going to have a "muscle party," at least you could invite the rest of us that are having one of their own, in their living rooms right now. Geessshhhhh!
Seriously, hope you feel better. I know how painful this all is.
Heather
Boy does this sound like MS...BIG TIME! I know that you don't have a diagnosis, but to this lady, this all sounds so familiar. Why the spasms seem to hit in all kinds of different places, is a mystery to the doctor's. They have never been able to explain that one to me.
Since your body is doing it's own cha-cha...I hope that you have an appointment with your doctor soon. There are many drugs on the market for these kinds of spasms, but truthfully, my doctor says that nothing but Valium will slow them down. I do not take Valium and do not push it's use. Hey, I take enough stuff that I could become addicted to, I don't need something else. But it's worth asking your doctor about.
Neuro's think what you describe is something similiar to a "muscle seizure" and often prescribe anti-seizure medication for it. I have never found them to work for me. The Neuro says if we could see inside the brain at the moment that these are happening we would see little sparks of action firing at various places in the brain at once. At least that's the way he describes it to me. It's almost like the brain is saying, "Hey muscle guys, let's have a party. Put your left foot in, put your right foot out, do the Hookey-Pokey and shake it all about..."
Please know that what you are describing sounds oh so common to me. Hope that you make a phone call to your doctor on Monday.
And look if you are going to have a "muscle party," at least you could invite the rest of us that are having one of their own, in their living rooms right now. Geessshhhhh!
Seriously, hope you feel better. I know how painful this all is.
Heather
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
