Hi, All. I've not been here much lately - too much going on...But I'm seeing my neuro tomorrow and plan to mention some things I've previously forgotten to mention. Does anyone have trouble with random, non-painful cramping? Maybe it is spasms, I'm not sure. I have trouble with one foot and upper abdominal muscles mainly: Sometimes the muscles just knot up very suddenly. It isn't painful, but it is VERY strange and uncomfortable!
Thanks for any feedback.
Thanks - once again, your research and experience helps someone else! Actually, the thing that made me wonder is that the foot that gives me trouble seems to be "stuck" in a permanent state of semi-spasm, if that makes sense. One toe is even in a funny position - and I've never stubbed or broken that toe.
I'll check back later, I'm being "summonned" right now...
Things are going so-so.Just finished another attack.Second one since March.
But I'm still going strong.
For the spasms,yes they will make joints do funky things and can have them remain in spasm.
I currently have spacticity in chronic form with myoclonus(tremors on extertion)both legs.That has sat in from last attack.I honestly think it was solu-medrol induced.To many steroids since March 12th.
There are meds to reduce the spasm states.Baclofen,being the milder form,zanaflex this one will cause drowsiness,valuim also drowsiness with addiction,ativan same as the valuim and quinine which can induce tinnitus.
At the current time I take a combination 4 times a day of valuim,baclofen,zanaflex and quinine until the spacticity lessons.
Stretching mildly will reduce the spasms and help keep the tendons from shortening .
Physical therapy helps also.But my PT lacks MS knowledge which doesn't help me.
The permant state ,yes I can relate I have an ankle that does its funky thing,leg brace keeps it under control.
The one thing about spacticity is(any form)the brain is getting or sending the wrong messages ,so when one muscle is to tighten,the other is to lesson and they are getting crossed signals and doing the opposite of each other and thus creating the spasms with or without pain.Mine have pain.I can be walking and get wrong signals and the cramps(major charlie horses) can drop me like a ton of bricks.Oh,that honks me off.
Let me know what your neuro has to say.Make yourself a list to ask him
Girl, you are amazing. When I "fell off the radar" you were about to start the steroids again (something I haven't had to do, and am GRATEFUL). You had been sheet-rocking, graduating a daughter (right? - memory...), you just keep going like the energizer bunny! And do I remember correctly, the PT guy is major eye-candy? Too bad he doesn't have MS background, but I bet you are teaching him.
I've never heard of myoclonus, but I've had "intention tremor" for, well, must be close to 20 years now. "Intention tremor" occurs with exertion, I'm going to research and see if it is the same thing. It affects both arms and legs but the most aggravating is my head. I CANNOT hold it still. And it has gotten much worse this past year. And it gets worse when I am stressed or angry - things I've been feeling A LOT lately! I sure wish you could catch a break on all the stuff that affects your legs, ENOUGH already.
I feel fortunate that this spas-ey thing with my foot is pretty minor really. It does seem to be connected to the excrutiating pain I often have in that foot, and I sometimes limp a little, but so far I have been able to tough it out when I have to and keep up with others when I walk, and to not show the pain around clients. (The 2-person company I am with just got awarded a multi-million dollar contract. I'd be jumping up and down but am absolutely too tired. We have one month to get all the details worked out and in place.)
I heard a commedian one time talk about how cats will run across the tile floor and accidentally slam into the wall, then coolly act like, "I meant to do that". He said then the cat goes behind the couch, where nobody can see them and says, "S***, THAT HURTS!!!" That's how I feel some days. Can't WAIT to get behind that couch!
Will check back after I see the neuro tomorrow. Oh, after you told me about INO/BINO I did some research and found many references to tremor and L'Hermitte's also being associated with brainstem lesions. I felt like I hit the MS jackpot - WOO HOO!!! I am so blessed that things aren't worse. But I am a little frightened about "brainstem lesions". Seems like I read somewhere that that is one of the worst places to have lesions. What have you learned?
I do have brain stem lesions.(they are the worse place to have them)it depends on size and how many.I don't want to know!
Thats what contributes to my legs being so wacky.But life goes on.Somedays are a struggle,I have days that I literally have to manually move my legs.Great velcro straps on the leg braces.Plus I can clip my cell phone on to them.I do use my cane more often(thats just to snatch a good looking man)
I'm like that darn cat.Thanks for the laugh.
Yes, I just redone my front living room walls.Have helped my 16 year old son redo the front porch, new joist and new floor boards.Now we are in the process of putting wood siding on the garage.As you see even though I have them darn lesions in the brain stem I still do.Yes. I have terrible balance ,the legs suck when making them move,but I refuse to give in or up.
I even joined the fitness center.What good it has done I don't know,but it can't hurt.
As far as the physical therapist the one who evaluated me was not comfortable working with an MS patient,so I got stuck with a real dumb a**,that has no knowledge of MS.She has no concept that I'll always have balance issues,I wear leg braces for Lord sake,they ain't their by choice.She wanted me to use a walker for the next 6 months,heck I refused,they ask why,number one I told them I forgot where I put it (memory loss)and number two I ask them how was I to climb a ladder with a walker.I know I'm a smart a** but that lady inferates me.She didn't know that peripheral visual loss was a symptom,nor did she know that spacticity was.I educated her from info from the net.She's been crotchety ever since.But thats okay,I see my electro-muscular Dr this week,she'll set this PT's straight with one phone call.The therapist doesn't want to stretch the legs first and after all the massive amounts of steroids I'm at risk of tearing a muscle.(still 2 weeks of prednisone taper off left).Your doing great if you havn't had to use them.
I only have the myoclonus and spacticity in my legs,I will get minor tremors in my hands after exertion or if I'm extremely tired.I do get the L'hermittes,but more so in the thoracic-c-spine area,not the upper neck area.
Your memory is very good,my daughter has graduated and has left for the Navy.She enlisted(turned down West Point) Nuclear Engineering.I really miss her.She's been gone 3 weeks tomorrow.I'll see her August 24 or Sept 1st grad day then she'll be in SC for 24 months.
Lilc,I don't let this disease get me down I can't . I'm seperated,I have a 16 year old son and a 12 year old daughter,if I give up or in ,I'm not showing them how to deal with what life throws at ya.I don't ever want them to see me give into this disease.My son has seen the worse of the last 2 attacks.he has learned how to do the steroid Infusions,he knows how to give me my shots and is up on all my meds.
Thats fantastic about your company thats awesome news.You 2 must make an awesome pair and work well together.
I don't worry about my legs,they may not communicate right,but as long as they are still attatched. They are doing research everyday and ya never know one of these days they may have an answer or something.
I'm fortunate to have a great team of DRs locally and get into see anyone of them when needed.
I hope your neuro gives you the answers you need on the spasms,I'm interested on what he has to say.Maybe there's something new that I don't know about.Thought about a tens unit,they say it helps with the spasms.There's also a chemodenervation,but thats permanant nerves severed.Heck both feet go flip flop now.The muscles behind and across my knees are whats effected now ,heck I'd look like a marinetted puppet.
Sorry about the visual.
I have been following your thread and the converstaion between you and Nuffs...I always learn from you two- - I wanted to say that you will be in my prayers and thoughts today. You have your docs on the East coast, right? So that means you are in DC right now...so close, and yet so far....
I loved the cat story...I have a cat who actually does prove that point. I wish I was my cat sometimes...and speaking of that, since we did speak of that not too long ago, my cat is going at 1 pm today back to the vet for more blood work and more tests (I didnt tell her yet) and Im pretty scared to find out if anything has changed...she seems okay- but who knows what goes on in the inside!
Anyway, know you are loved and needed here, please do let us know the outcomes of this appointment, okay? I miss hearing from you.
The appt went fine. I will be going for an MRI, then back to neuro in 4 weeks. She kept the page I had printed for my file. No new meds, but she's referring me to an opthamologist in the near future. Nothing alarming, but I have new weakness in one foot/lower leg (surprise!) and some loss of feeling in the other.
We'll see how the MRI looks.
Yep, I'm in DC right now, headed to AZ Thurs early morning - MUCH to do on the other end. Gotta run now, trying to get to work by 7 here (grrrr)!
You rock, Lilc. You always make me smile. Dont know how the cat is....she got shots yesterday and hasnt been the same since....meanwhile, he wants to do an Gastroscopy on the cat- which my husband is NOT going to allow; its a $1000 procedure. He thinks there is something growing in her tummy....
Glad to hear the visit went good....youre still on the same meds...and you have your MRI coming...me too, but yours is probably first. Mine isnt till the very end of August.
Wishing you well...have a good day...give my love to Phoenix.
i have that spastic thing and it seems to effect my right toe, it's almost as if someone were pulling my big toe straight at me and then it starts to twitch. It doesn't hurt just has a weird feeling to it. This ms also seems to effect my legs mostly my right leg. I actually think I have atrophy, it looks as though my right calf is smaller than my left calf. I don't know, but I also limp I swear my right leg is shrinking. My husband just keeps telling me to stay off my feet more and I tell him I don't want it to shrink more. But I sure understand where your coming from.
you know we had a monsoon last night and it felt sooo great, but we are paying for it in humidity today soooo friggin hot and muggy feel like I'm back in Florida, more storms predicted tonight.
I had that for my cat five years ago and they found nothing wrong. I later went to a new vet since the one I had always seemed to want to do new tests everytime we went there. The new vet told me that even if the kitty had a tape worm they would be able to see it on an x-ray and save myself several hundred dollars.