Legs giving out again

[lstrl]

I've been through this before, but it seemed like it went away for a while and now it's back. My legs keep feeling like they want to give out on me, and a lot of times it is when my body is fatigued, but a lot of times that's not the case. Almost every time I get up from my dining room chair, my right leg kind of gives out on me for a second and I have to catch myself before I can stand up straight.

I've also noticed a lot in the past week or so that when I'm out shopping, my left leg gets a slight achiness and whenever I get that achy feeling, my leg keeps wanting to give out, so I have to slow down and step very carefully so I make sure I can actually support myself. Sometimes it feels like it's more in my foot, and other times it is actually in my leg. Tonight I got out of the shower and was standing there with most of my weight on the left leg when it completely randomly gave out on me and I had to grab the counter to keep from falling. In that case, I wasn't even moving, and I believe that is a first.

I have gone through a phase where my legs would give out on me, followed by very severe lower body weakness to the point where I almost couldn't walk anymore. It did remit (unfortunately left me with quite a bit of weakness still so I can't do nearly as much as I used to back in the good old days), but I'm so scared it's going to happen again. I've also noticed that my balance has been slightly worse lately than what I've considered my new normal for a while.

Am I freaking out about nothing? Or should I be concerned that something bad is about to happen again? I haven't had an official flare in a year and a half, which is the longest I've gone (but I'm also new at this, so I don't know if that says anything or not). I don't know if it is relevant or not, but I also started taking Provigil about a week and a half ago.

[AriD]

I would check in with your neurologist. It doesn't sound related to provigil but could be or the heat of summer slowing you down. But could also be a relapse or something else.

I have also been having more and more leg achiness and weakness, feeling like they are going to give out. I can't walk at much at work before having to sit down. If I stand for awhile I have to lean on something and shake my lower legs because they ache so much. Is this the feeling you are getting?

I thought maybe it was related to the summer heat- feeling worse now. Or just not resting enough. Are you getting rest every day?

[SNOOPY]

Hi lstrl,

It would probably be a good idea to contact your Neurologist.

It might be an exacerbation. It could also be that heat may be playing a roll in a pseudo-exacerbation, tis the season . Physical Therapy might help as we don't always exercise all of the muscles needed to support the knee and leg.

Take care

[lstrl]

Well, after I attempted to work out tonight, I can definitely say my legs aren't any more cooperative today. They should be getting better (they did last year after I started working out), but instead tonight was my worst experience yet for this year. My legs felt like bricks and I could barely move. Sadly, that happened the last time right before it got totally unbearable, only that was during a cold spell so I initially thought it was because of the weather.

I don't actually have a dr right now because she left and the clinic hasn't replaced her yet. I'm seeing a PA (they won't let us switch to the dr that is still there) and he doesn't listen to me when I say I'm feeling bad. I tell him things feel like they're getting worse (I did see him the week before my legs started feeling weaker, but I did already notice a bit more loss of balance), and his note on my chart said no changes. I feel like he will do the same thing with my leg weakness and just shrug it off because I still can walk without an aid, unlike many of the patients that go there. This has made me very hesitant to even report anything. I'm sick of being told how great I'm doing when I keep feeling like I'm deteriorating.

[AriD]

I know how you feel. The last few months I've felt much worse and my neurologist does same as your PA. Can you reach out to your PCP? Maybe they can help get you a new referral or some testing.

[aisunnen]

pilates?

Hi Istri, I'm wondering if "trying to work out" as you did is too strenuous? I happened to find a very intelligent Pilates instructor who does one-on-one sessions and has several MS patients like me. This is like Pilates for babies, and an hour of very gentle exercises (like trying to lift up my bum left leg) is plenty tiring, but I don't have weakness afterwards, or pain. Once a week is what I can afford ($55/session), but most of the benefits come when I practice the same exercises at home. I'm female, so likely more flexible than most guys, don't know which you are. I'm sorry you are transitioning with a neuro, the PA doesn't seem too good.

[MyGirlsMom]

I second the Pilates suggestion. It has been a life saver for me. There have been times when I had real challenges with just doing some very basic exercise, but Pilates has strengthened me in a way that is safe and works all the various muscles groups. I highly recommend it!

[aisunnen]

Standing after sitting for a while

Istri, I have to wait for maybe as much as a half minute after I stand up from a meal, or even watching the news for a while. I hold onto the chair and lean on one foot, then the other, until I can move without support (except for my cane, of course.) I know the same thing will happen the next time, so I can sort of plan on it.

[artfan]

Leg giving out from under me

I've been through this before, but it seemed like it went away for a while and now it's back. My legs keep feeling like they want to give out on me, and a lot of times it is when my body is fatigued, but a lot of times that's not the case. Almost every time I get up from my dining room chair, my right leg kind of gives out on me for a second and I have to catch myself before I can stand up straight.

I've also noticed a lot in the past week or so that when I'm out shopping, my left leg gets a slight achiness and whenever I get that achy feeling, my leg keeps wanting to give out, so I have to slow down and step very carefully so I make sure I can actually support myself. Sometimes it feels like it's more in my foot, and other times it is actually in my leg. Tonight I got out of the shower and was standing there with most of my weight on the left leg when it completely randomly gave out on me and I had to grab the counter to keep from falling. In that case, I wasn't even moving, and I believe that is a first.

I have gone through a phase where my legs would give out on me, followed by very severe lower body weakness to the point where I almost couldn't walk anymore. It did remit (unfortunately left me with quite a bit of weakness still so I can't do nearly as much as I used to back in the good old days), but I'm so scared it's going to happen again. I've also noticed that my balance has been slightly worse lately than what I've considered my new normal for a while.

Am I freaking out about nothing? Or should I be concerned that something bad is about to happen again? I haven't had an official flare in a year and a half, which is the longest I've gone (but I'm also new at this, so I don't know if that says anything or not). I don't know if it is relevant or not, but I also started taking Provigil about a week and a half ago.

Hi Lstrl...You have described EXACTLY what I have been going through, leg-wise, over the last few weeks...and getting worse!! However, my gp doesn't seem concerned in the least...not even indicating it in his chart!

I have no MS dx yet (perhaps never) but was just dx with Fibromyalgia. However, the doc that just dx me said it does NOT answer the other problems/symptoms I have that are just like MS. He also stated that I will probably have more than one diagnosis. Yet, I can't seem to get a referral to see one...even though there is one (MS specialist) that would very much like to see me!

The fear of falling (and ensuing embarrassment) is now always with me cause I never know when it's going to happen. To think my house has two flights of stairs...scary!

Any suggestions or comments would be very welcome!

[ham_sillier]

Lstrl and AriD, hearing about doctors not listening to their patients seriously infuriates me. If someone is getting paid to see me, then they're going to give me a few minutes to talk about my concerns. I'm not in the medical field but my aunt is a PA and she constantly tells me that self advocacy is one of the most important skills I could ever learn. If you have concerns and your doctor is ignoring you, then you're seeing the wrong doctor.

now I have a lot of trouble walking so take this with a grain of salt. I was standing about to say something to my mom and my knees gave out. They hit the wall and my feet slid out to the sides, think like the shape of a pickax with my legs as the handle. It put so much pressure on my knees I thought I was going to cry from the pain. I was only in that position for about 15 seconds and I had a vasovagal response. To the point that, my vision went back, my arms and legs went cold, I thought I was going to vomit and or go pee and or be sick from the other end, nice speech slowed down, I couldn't use my arms, and at the end when my arms and legs weren't cold anymore, my torso heated up and I started sweating. My brother could feel how hot I was through my shirt and his pants. That response I had means I should have Fainted but I didn't quite get to that point. As a result, my knees are quite sore, I can barely stand on them let alone take a step. I fall A few times a month never anything too bad though. The last fall that was scary was about four years ago and all that was was a slight misstep on a flight of stairs. I fell from almost the top and got my legs stuck in the rails of the banister. Didn't break anything but my leg was seriously swollen.

If you have concerns about your ability to stand or walk, those are kind of major parts of doing anything and your doctor should take your concerns seriously and never dismiss you offhand. If you're having a little bit of trouble walking or standing, I'm on a drug called Ampyra which is basically responsible for most of my ability to stand and walk right now. Do some research to see if it can help you. Good luck.

[Echo2099]

Lstrl and AriD, hearing about doctors not listening to their patients seriously infuriates me. If someone is getting paid to see me, then they're going to give me a few minutes to talk about my concerns. I'm not in the medical field but my aunt is a PA and she constantly tells me that self advocacy is one of the most important skills I could ever learn. If you have concerns and your doctor is ignoring you, then you're seeing the wrong doctor.

So true!!

I was in the medical field prior to MS, and your aunt is correct! Being your own patient advocate is a must! We may not be able to control much with this disease, but we can control how we are treated by doctors and other clinicians!

If we don't make ourselves heard, no one will listen. I have told a doctor 'You are fired!' and walked out of the office.

I have also told my neuro, 'No, to me, that does not sound like a good plan. I would like to try XYZ. Why is your plan better than mine?"

Then he discusses BOTH plans with me, and I listen to his reasoning and he listens to mine. But I am the patient, and I make the final decision.

Maybe I just got lucky and have a great neuro and PCP who not only work for me , but with me!

And for me, that is a must!!