I have kind of noticed a pattern here (l think) It seems that ppl have more problems with there right sides than left? Am l seeing this correctly? Let me know what side is bad for you. I'm curious
I bring this up because my right leg decided to turn to "jello" yesterday, hopefully it will be back to normal today ugh.
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So sorry for the Jello leg. Interesting that has been a term I used to describe my legs too. Hope it resolves soon.
For me, a few things bilateral but most right sided: weakness, hearing problems, trigeminal neuralgia, foot drop. It wasn't until more recently that I heard someone suggest that MS usually strikes 1 side more than another.
I hadn't heard that(the one side or another) I know that trigeminal neuralgia is usually just one side, but interesting that almost every thing I have (minus the occasional "jello legs and arms) is unilateral.
Mostly my left. But frequently my right joins the club so it's not left out! By three o'clock most days my left leg is numb from the knee down, so it's like walking on a pegleg. Then my right leg starts dragging. It is my zombie pirate stage of the day!
Love the "zombie pirate" I think I'll borrow that one. Explains me when having spasms in my shoulders and legs. Usually trying to get to bathroom. Lol. That's a good mental picπ
Oops. Forgot to say my left side is weakest. All my left shoes are worn at tip of toe for dragging it. Drop foot. I try to think about it and purposely and practice flexing it up. Especially in bed. Don't let the sheets keep in down. Does this make sense?
bavery207 l dont know, l write left handed but my right side has always been more dominant/stronger, yet now it's the 1st to go. Leg and hand then arm.
Generalised but worse on right. Right leg has flexor type spasm ( lifts off floor if I don't remember to stand with my weight on it ! ) and turns inward more from inner thigh muscle pull, so worse pigeon toeing on that side. I christened it my 'spaghetti' leg during relapse as it wouldn't bear my weight, push or swing forward. It improved some once stiffness kicked in again after 2 months but collapses if you push your luck overstressing it. Right shoulder developed similar spasm this time ( seemingly triggered by position/pressure on right back muscle ? ) I am right handed. Bear in mind I am not yet diagnosed so this may not be at all relevant ! : )) x
My right side is the one that's effected, but I've noticed that my left side has been giving me problems lately. Because I have relapsing progressive MS I keep hoping the pain/problems go away on my left side. One can only hope-right? : )
Bilateral weakness in the legs, but the right is dominant. Right foot drop and leg drag for years, but left leg now showing slight foot drop. Fortunately my arms are still relatively strong. Without them, I'd never be able to push up and out of a chair. No strength in the legs to do so.
So including me so far we have 10 right side is more prominent than the left. The lesions l have are on the right side of my brain and lm left handed. But l can write with my right hand if l have to. My left leg does get affected if l do way to much, but mostly my right.
Mine too. It has gotten progressively worse-at first I thought I was just in a hurry and getting sloppy-I don't write often, so I thought maybe that was why it was so bad. I often can't read my writing-but have to make notes on everything cause I cannot remember things!
I have been able to slow and reverse some of my right sided weakness thru weight, strengthening exercises. Be careful tho. As did cause me an injury. Go slow and cautiously and if possible with help PT.
The last 3 times all different places/cities were all bad experiences.
1 place left me in a room by myself with a what's it called? 10s unit? Something like that. With it up way to high and l almost broke the machine ripping it off my back.
2nd place kept pushing my leg so bad that l couldn't walk for a wk.
And the 3rd place looked at me and said there was nothing wrong with me and tried to sign me off like that. Needless to say l was flaming.
Eh l gave it the 3 times and your out try lol so l try to be as active as l can at home. And walking my dog. I have a friend who goes with me just incase of "jello" legs.
Thanks, Erash. My podiatrist sent me to PT because my right calf was so tight due to the foot drop. (So many here have MS that even she is an MS expert. Her mother-in-law has PPMS.) For years it has felt like a dried up rubber band was wrapped around the back of my ankle (Achilles heel), and was about to snap with every step I took. I attended a few PT sessions, but it was so HOT in there, I had to quit. So I decided to continue doing my exercises at home with my stretch band. The more my feet hurt, the more exercise I thought I needed to do to strengthen them. I didn't realize I was further injuring the tendons behind my ankle as well as those that wrap around both sides of the arch. I'm doing better now, but I can't go without my afo, and must wear my shoes (with prescription orthotics) at ALL times. My doc threatened the dreaded boots to immobilize my feet if I didn't. I'm doing very light stretches now (no bands!) and I should ice more. (My husband did the rolling ice when he had plantar fasciitis.) if it doesn't get a whole lot better soon, I'll need to wear night spints. It's amazing how something like our feet can be so very important!!
Hello. My left side has taken the blunt of it. Mainly my leg. It stopped my from walking more than about 3 blocks. I went for HSCT treatment in Mexico and am up to 9.1 miles. It will be available in the US in 2022. My MS didn't want to wait.
Oh. The stem cell procedure was easy. It was an outpatient treatment. They treated me like royalty. I highly recommend the treatment to everyone. No Tysabri or any DMD since February 2nd. The doctors words to me were, remember how you feel right now, for 91% of the patients, this is the worst you'll feel. He was absolutely right. He didn't mention any symptom reversal but they are there. Best decision is ever made all my 44 years on earth.
1RiskyRich 19 of you? All of you had it done at once? And how was it done as an out-patient? It's my understanding that they have to remove stem cells, and something like chemo. I'm confused lol
The quick version. It is a 28 day procedure. First few days are nothing but exams. Them 3 days of chemo. A shot 2x a day to make the stem cells reproduce. Then a PICC line is places. In a couple of days they harvest your stem cells. 2 more days of chemo to finish off your immune system. Your stem cells are given back and one is monitored. 1 day before you leave they give you Rituxan. That's basically it.
Yeap. It wasn't bad at all. To me it was nowherenear as bad as having to deal with MS for the rest of my life. I guess if I was in my 60's I wouldn't care. But I have 2 boys & I would like to stand at the alter or even be around when they marry.
Mine symptoms are bilateral, but more prominent on the left. Fortunately, I'm right handed. My writing has suffered, however. I'd love to see my MRI report.
My first neurologist visit is today, so I hope I can see it. I would assume we have more lesions on one side than the other.
It's the feeling that someone or something is squeezing or hugging you. It's the muscles in between and around your ribs that are spastic tight feeling like you have a tight wrap around you. Mine is on my right side from under my arm to my waist from my spine around to my belly button and the middle of my chest. It can be quite painful to just making you uncomfortable.
Me to WAshingtongirl thank you MichaelFleeger l wasnt sure. I sure know l dont want it. Do they know which lesion can cause it? ie: spinal, or brain? Or does it just happen?
My left leg gives me a great deal of problems with weakness and drop foot. Both hands tingle. I am right handed and my right leg does not give me trouble. I have PPMS. I finally got lucky on my fifth PT. She was good, gave me some good pointers for mobility, stretching exercises and got me into an AFO. Not very good for inclines but very helpful on straightaways.
I woke up one morning and my right leg and arm was very weak. In fact my right arm was so weak that I had to use both hands in order to lift up my coffee pot to pour my coffee! This was my 1st experience with MS. Luckily most of my strength returned, but my right side is not as good as my left side.
It's amazing how MS can hit you out of the blue like that Blue51 , mine hit me like that also. Just was my right leg tho. I'm glad you have most of your strength back
Lol Good_enough l hope you're left handed? If you weren't lm sure you are now ? I'm sorry to hear you had the shingles, lm waiting to hear back from my neuro to see what he had to say about the vaccine. Even the thought of getting the shingles scare me.
Thanks JES... I go to a clinic for ms. The nurse told me that a person with Ms should not get the LIVE vaccine for shingles. So, I guess there is one that's not live. Definitely check with dr. Firstly .
Good_enough is there one that isn't live? I have no clue ugh. I also go to an MS clinic at URMC lm sure they will get back to me next wk. I should ask about the phuniona vaccine also. I'm always getting sick blah.
I never thought about it, but yes, my problems are all right sided. (Plus the bonus herniated disc) My right leg has been numb and tingly since 1989. I was told at the onset it was nerve damage from a car accident. My right hand does not work as it once did as far as writing, knitting, crochet - and painting - well I have not tried that for a long time. My right eye does have problems-not reacting to light-and being slightly cross-eyed. May be MS may be "nerve damage". Charley horses in the right leg pretty often-very painful. Now I have the muscle pain in my upper abdomen-ribcage feels like a charley horse-not just on the right. That is a weird feeling.....anyway, next week I may be able to get an answer on what they are going to do about the disc-I am concerned about the Copaxone and the cortisone (if that's what they use). I saw something about cortisone suppressing the immune system...I need more answers.
Hi heathera1 those slipped disks are a pain arnt they? It's not like they will slip back into place, ugh. I have 3 of them, and have been "trying" to follow Dr's orders for the past 18 yrs or so, no lifting more than 5lbs, HAHAHA , no falling, HAHAHA , try and be very very in snow. That one l do. But l do try, 2 back surgerys is enough for me cause next time l might not walk..
Do they think the trouble with your eyes is optic neuritis? Or something else? And maybe the muscle pain in your chest is the MS hug, that WAshingtongirl , MichaelFleeger and l are talking about? Idk?
I wish you luck with your Dr's this wk. Plz keep us updated
Doc says it's herniated L4 & L5 with S-1 involved. Yay. I go back to see about shots Wed. Hurts bad! Right hip horribly painful to even stand. Doc gave me Tramadol-Acetaminophn - first dose made me dizzy and lightheaded. Great! So I started cutting them in half. Helped for a couple of days, but today was miserable. Took them whole again. I would rather be a little dizzy & lightheaded than in so much pain! And of course, they cause nausea too! The ER of course, xrayed my hip only and sent me home, telling me I had arthritis, I was in horrible pain when I went there, got no help except finding out my hip was not broken. And, to top it off, the discharge paper work said "Pain scale = 0" I know I told that Dr. it was 10!
Yep, they said it was optic neuritis, plus the start of cataracts. I really had not even thought of the "MS hug"! Thank you for reminding me of that. It very well could be...who knows?
Orthopaedic surgeon had a fit when he found out they just xrayed my hip and not lumbar spine too (it did show up in xrays done in his office). He is sure all of the pain is coming from the herniation.
No falling is always a good idea. Do you have drop foot too? I have fallen from it- only once but of course it was down the steps! May have to get one of the braces. Have you had any experience with them? They seem to be convinced that my drop foot is MS and not spinal....but it was acting up when I was in so much pain I could hardly walk and that started up too! Urug!
Hi, Heathera, I also am sorry you are in so much pain. I hope your doctor can sort through the MS and back issues and determine what is what so he can better treat you.
I also have foot drop. My right foot showed symptoms of it not too long after my first MS symptoms. I got my AFO (hard plastic form-fitted one) about 20yrs ago. I haven't worn it all that time, but I believe I may have to from now on. My left foot is also beginning to show signs of foot drop as my left leg continues to weaken. I wear the Ossur Foot-Up on it (it helps with mild foot drop on me, but does nothing for my right foot which has more severe foot drop).
I think if you type in AFO and the Ossur Foot-Up, you may be able to read previous posts on the subject.
Please let us know how your tests and appointments turn out. And take care. You do NOT want to trip and fall.
Thanks. I apparently have had undiagnosed MS for many years. I will look up the Ossur Foot-up and AFO. Right now I have resorted to using a wheelchair downstairs because of the hip pain and herniated disc-any weight on the right side hurts like blue blazes!
It's wonderful how the ER's are lately. Ours here was getting really bad to, until my hospital bought them out. So they are getting better. I'm so sorry your going through all that. Now which Dr are you seeing tomorrow and what shots? I got confused somewhere lol.
As far as optic neuritis, when I had it, they gave me the solumedrol infusions. What did you do? And didn't it help? I hope!
Yes l do have foot drop in both feet. For no reason. Hahaha It's not related to the back surgerys or MS or the nerve damage.
Started Easter Sunday about 7 yrs ago, my right foot fell asleep then a wk layer my left did. Sent to hospital sent home with a walker and "boots" . Walked in the door and proceeded to throw the walker down the stairs and fall on my face :/ hahaha
I got lucky as l learned to walk based on my ankles. As l can feel from the ankle up. The braces l wear in the winter are a very secure ankle brace, it goes almost down to my toes, and up about4-5 in above ankle. Just because of the snow. My summer ones arnt as supportive. So l have to really pay attention.
I see the orthopaedic specialist tomorrow...I think it may be cortazone injection but I don't have all the info till I see him.
Sounds like you have been thru a lot-that fall down the steps sounds like something I would do. Didn't break any bones did you? Hope not.
You have foot drop and they keep telling you it is not the MS, the lesions or back surgery. Aren't they wonderful? It is so frustrating not to have any answers isn't it? I get so aggrevated with some of the Drs. attitudes!
Do the brace help? I assume they do-may look into getting them soon. Seemed like when my back/hip pain is so unbearable, the drop foot kicked (haha kicked) in.
What kind of braces do you wear, Jes? The hard plastic AFO that is open in front, but goes nearly up to the back of your knee? I posted a pic of mine on here somewhere. Like you, I tend to fall going upstairs because of the foot drop, but also have to watch going downstairs due to a problem with my depth perception. For me, an 'up' escalator is the worst! Fallen twice going up on those. Hurts when your shin hits that metal-edged step. Ouch! But oh, the embarrassment!! π¨
Yeah. The neuro for some reason (I don't know why) seems to want to change my medication to either Techfidera or Aubagio. it may be because of the Copaxone lumps. These are minor and most go away in a day or so. I forgot to ask him a bunch of questions! OOPS. Now he wants to do another test to see if I have drop foot....Ortho says one thing, Neuro says something else. But nobody wants to LISTEN! I am not one who cries, but yesterday I had both appointments and came home in tears-twice. Ortho said it would take 10 days to 2 weeks to get approval for a steroid shot in my hip. The insurance company said to have him mark the request "URGENT" and they would deal with it in a day or so. It is a herniated disc that is causing hip pain apparently. Urruggg... Ortho cannot even get my meds straight in their records-and they are supposed to be the best in the area! Well, the office people are NOT! Neuro is going to run a test to see if it is drop foot or related to the disc herniation. Sometimes I really don't know if they are any help at all!
Jessmcd2 it's Fancy 1959. Your post just now popped up for me to reply to. I don't know where the glitches are but there's something going on in this MSAA chat room. To reply to your post my right side has definitely been hit harder than my left side. But qualifying that perhaps I notice it worse on my right side because I was right side dominant. Since I've lost dexterity, feeling, and strength on that side it's affected me a lot worse than losing the same thing on my left side. You posted another great question that has generated a lot of replies and thought in our chat room! Getting people involved in this chat room is our goal. We are stronger together which means we need more numbers to become indestructible to this monster we all fight, called MS!
I was reading through this including my prior post. Both of my legs have been stiff, sore and having "Charley horses", spasms the last month. Doc started me on Baclofen. Symptoms are mostly on left leg, but the right is catching up. So mentally tired of fighting off these spasms, spasticity.
Hi Calfeechick, my little red bell at top of page notified me of you liking my post on this thread, so I came to refresh what we had been talking about. So sorry to hear of your worsening symptoms - spasms and cramp suck ! I get more these days, especially foot cramps while walking and a ridiculous gluteus/thigh cramp that cut short a rare intimate moment with partner ( grrr! ) I find I'm pulling muscles more easily too. I wonder if gentle walking with 2 sticks would help to take some pressure off the muscles, so they are not working so hard ? If you can bear it ( and I know it can be painful ) some leg stretches might help ? I do pointy toes then toes upwards towards body while lying down, to get that muscle stretch feeling ( ouch but it's for the greater good ! ) x
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