what's going on? My feet feel like lead. This has been going on for the last few days, and my knees have been buckling too, when I'm tired. I'm literally shuffling now when I'm walking.
I'm also experiencing stronger muscle spams/ jerking in my limbs that are scaring me, they used to be small tiny jerks that only occured when i was in a resting position but now they are very strong spasms- the last one had three spasm in a row and almost knocked me out of my chair. And sometimes during the day my head feels like it's too heavy to hold upright and it falls backwards, or I realized that it's resting almost on my shoulder.
As most of you may know, I'm in limbo-land and my neuro is waiting for test results and doesn't want to see me until the last of July. He did say that we are "probably looking at MS" but there are many other things to consider.
I promised Rena that I'd call the neuro this afternoon but on their recording they say they won't get back with you for a week.
Please, is this ok? What's happening?
I called the neuro and basically lost if on the message machine... I was talking about myself and couldn't remember what I wanted to say. I had to call back again. I apologized for the brain fog... but I feel like I'm losing it.
I was always able to laugh about it until today... I just feel like crying right now. Why? I'm going to sleep, I'm exhausted after almost 7 hours of classes today.
please remember me.
Does your neurologist have an on-call service or any other way to get in touch with him or her? I would try to find out and if not, maybe your normal family practice doctor can help or at least give you some direction. Good luck and be careful!
Nope, no on-call service.... when I called the second time to leave a message i actually got a live person but she when she heard I had already left that first one-half of a message- she promptly transferred me to the message machine again instead of letting me talk to her. I understand how busy they are- but it would have only taken 2 minutes.
My nap didn't seem to help... I guess I'll have to wait this out...
Sunny, do you have anybody that could help you out with contacting the neuro? I know how things are when you're in the middle of a flare - it's hard to process info enough to communicate to the neuro what's going on. Maybe talk to your PCP?
As for whether it's okay or not... well, it *will* be okay. With MS, you get these relapses, and when you're in the middle of one, you feel like crud, and nothing works right. You know there's something wrong, because you can't think straight. The good news is that you eventually will go into remission, and things will be better than they are right now.
From my experience... take with a grain of salt! The jerks you're experiencing are muscle twitches, caused by your nerves misfiring. I get these along with pinprick pains in my legs, and they jerk involuntarily. Your heavy head is because the muscles of your neck are weak, and don't want to hold your head up. And your legs feel like lead because of muscle weakness, and fatigue.
If your symptoms are really bothering you and causing mobility problems, I would push for a round of IV steroids. They'll reduce inflammation and make you feel better, but they won't stop any damage you're getting. You might be able to get your primary to prescribe it, if your neuro is out of touch.
If not, all you can do is rest and wait it out. Get plenty of sleep, eat lots of fresh fruit and vegetables, stay away from heavy meals and red meats, as they'll make you feel more fatigued. I like the fresh fruit especially, because you get a burst of sugar, which goes right to the brain and makes you feel better.
Well... I've only seen my PCP twice in my life. I know, hard to believe, but we moved here a few years ago and I've found specialists for most of my problems, and have visited a clinic down the road for the rest, but it just closed down. SO, I found a different PCP and haven't been impressed. So far, all she's done is announce that the pain in my rib cage area "isn't from a broken rib" (that was after she jammed on them- no testing involved). She's not really involved at all in my neurology care- she doesn't even know my symptoms- my eye doctor is the one who caught what was going on.
Thanks for the encouragement, I needed it. I feel awful, and these things are unusual to me, even though I've got a "time-line full" of other symptoms.
I'll try to get some extra sleep- but I'll pass on the fruit even though it's a good idea- my stomach doesn't work properly and I'm allergic to some fruit- so between the two I have to stick to canned peaches and applesauce! :)
I hope this changes or lets up soon... this whole knee giving out and falling thing isn't good- I'm used to poor balance and falling backwards and am using a cane for that but simply "bottoming out" isn't very fun when it happens several times a day and in front of other people who don't understand!
Your knee's giving out, huh? sounds like me - my right leg went all floppy and wooden, and didn't feel like my leg for a couple of months. It's back, mostly, but my right knee is still weak and folds up unexpectedly.
This sounds crazy, and no doctor would recommend this, but the leg with the knee? I turn the foot out to the side, so when I use the leg, it doesn't depend upon the knee to keep it straight. It looks weird, I'm sure, but I feel a little more stable.
Hmm... It's odd that you'd mention that- I noticed my gait is really changing in the last week. I mean, besides the fact that I'm shuffling everwhere I go and wearing the bottom off of my feet.
I find myself flailing or swinging my arms to "make myself move forward" and sometimes I am walking with my left foot turned sideways and sorta swinging the right leg from the hip out and around to get it foward. I'm not sure why I'm doing this... maybe it's a stability thing like you said. :)
I'll think about it next time I walk down the hall. Right now I'm trying to write a two page research paper due tomorrow (let's not think about the papers due Thrusday)!
If they are the same, still heavy and shuffling, I really think you need to have it documented by someone while your neuro is out. Maybe even a trip to the ER in is order. It could help with your diagnosis.
I know it's inconvenient and can be an expense to go to the ER.
I really hope that SOMEone can see you shuffle the way you are besides just your family. Try your best to write down exactly how your legs feel when you walk with descriptive words in a journal, so your neuro will be able to picture it when he hears it.
Something like what you wrote in your first post, like them feeling like lead. Like you don't understand what's happening to your feet and legs... like that, and the spasms.
Be as descriptive as possible, and write how it makes you feel emotionally, too, perhaps without seeming too wacky. Just that you seem to have lost the power in your legs, and how helpless it makes you feel, if that's true.
Good luck, and let us know how things are going. Hope you hear from Dr. Untouchable.
I checked this before I fell into bed, and I found you'd replied- thanks for the advice.
My nurse called me back at supper time- the only thing she had to offer was an appointment in a month.
I asked her about returning my migraine meds to their previous strength (what I was taking two or three months ago) due to my really bad migraines this past while and she said I couldn't until she talked to the doctor.
I asked her about my symptoms and she hummed and said she was setting up that appointment.
Not very helpful.
I feel like crying a lot this week, is that usual? (nope, it's not "that time") It's a lot of work to get anywhere and so slow going, and then I just randomly feel like crying.
I'm going to take my shaky self and stick it in bed and try to get some sleep.
Thanks for the hugs,
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