So for about a week or week and a half I've been having problems with my legs. They start to feel weak like jello in the late afternoon and by bedtime I feel like they're shaking. Mostly in my left leg.
Tonight its really bad but different. Around 4the this afternoon my left leg started hurting. It got so bad I had to lay down. It felt like I had shin splints, my foot burns and tingles, my thigh front and back feel like the muscles are in knots, and all around my knee hurts. It hurts to the touch. I can't extend my leg I have to keep it bent. I'm also having vibrations and not shaking. I'm obviously limping when I walk and to get up the stairs was very hard. I've also been having muscular pains in my left arm.
This is all still new to me. I was just dx in July. I had to stop taking my copaxone temporarily because of a rash I have. I've been off of it for 6 days now and was getting ready to start my third week.
I guess I'm scared. My initial sx was only numbness and tingling. Now everything seems to be going downhill fast (for me). Like I said I'm still new to all of this, but I am really worried. I just don't know what to think or to do.
Are you taking any sort of spinal muscle relaxer? I hate to go with spasticity again (when you have a hammer, everything looks like a nail!) but it does sound like you're experiencing spasticity.
I have constant problems with weak jello legs. Now it's a daily, constant sort of thing, and I've gotten used to it. When it first started, I wasn't sure they would hold me up - and sometimes they don't. I've learned to stay near the couch until I'm sure they're working.
After a few weeks of weakness, I started having problems with incredibly sore and stiff muscles. I didn't know what was wrong at first, and my neurologist wasn't much help. It was forums like this one that helped me figure it out.
Spasticity (at least how it presents to me) makes certain muscles really sore - to the point that it's hard to use the muscle, because it's so sore. (I'll get into why it's hard to use the muscle later!) It makes the muscle weak, and it's hard to do stuff because of the pain.
There's been a couple of posts lately on spasticity - I'll see if I can bump one of them up for you. There's a great health page on spasticity, and COBOB knows quite a bit about it.
What to do right now? Well, call your neuro. I think you're going into a flare - with your multitude of symptoms, it sounds like a flare.
You can also do some stretching. Do this carefully - sometimes it'll set off a spasm. You say you're having a hard time straightening your leg. I would use heat on the muscle (yes, I know it'll make it weak, so make sure you're sitting down!) and see if you can stretch out your leg. The problem with spasticity is that the muscle fibers shorten over time, so you lose flexibility. If you don't stretch, then you may never be able to straighten that leg.
Another thing you need to think about is those stairs. If you're having trouble walking, you can easily fall and injure yourself. I know doublevision1 has done it, and so has Fluffysmom. Injury with MS is even worse - you're going to have spasms in the injured leg, and you don't need that! See if you can sleep on the couch for a night or two while you get your leg problems straightened out - so to speak.
It sounds like spasticity to me, too. I get that feeling a lot in my left leg and they think it's related to my spinal lesions. I'll feel a tightness on the back of my leg from the top, all the way down and my foot will be numb & tingling. And the sides of my knee will be so tight and achy. Too much of this makes my legs feel like jello and shaky.
Are you already taking Baclofen for spasticity? I think you should definitely call your neuro about this.
Thanks for the comments. I am not taking baclofen. I'm waiting for my neuro to call me back today and hopefully he can prescribe it to me.
Today I'm really tired. My leg is really sore. I still have pain around my knee but I can extend my leg. It's still pretty weak but nothing like yesterday. I also I have a buzzing sensation in my foot every 3-5 mins.
I guess I'll give an update once I talk to my neuro. Thanks again for the comments.
So I talked to my neuro and I think I'm worse off now mentally than I was before. He said MS normally doesn't create the kind of pain I'm talking about. He was on the fence 60/40 as to if I'm in a relapse or not. Since I have an appt with him on Monday he wants to wait until then unless I get to the point where I can't walk.
I specifically asked him if ms can cause muscle spasms and he said no. I'm shocked. He is a ms specialist and on the ms society list of docs to go see but yet he doesn't believe ms causes muscle spasms. WTH?! I don't even know what to do now!
I would agree with you but I had this same problem with the same leg, with the exception of not being able to extend it a week ago before I hit my knee. I called the MS Society and had one of the reps explain spasicity to me and I explained what I was going through. She said she was shocked at my neuros response. So I've decided to take the literature that I have on it to my appt on Monday. I'm going to ask my neuro again if ms causes muscle spasms. If he still says no I'm going to show him the literature and see what he says. If I don't like his answer I guess I'll be looking for a new neuro.
When I talked to the rep from the MS Society I got a list of other neuros in my area. There were 3 that interested me at a MS clinic at UK Medical Center. I'm really hoping that I don't have to start all over with another neuro, but I'm prepared if I do!
That's great that you're not afraid to stand up for yourself. It's a good idea that you're going to ask him first about the muscle spasms. Then if he gives the same response, you have your literature you can use to discuss it with him.
All I have to add to the above comments is stretch, stretch, stretch! Do talk to your neuro about Baclofen or Xanaflex, and if he's still being an ignoramus about spasms and MS, start shopping for a new neuro.
So my neuro appt is tomorrow and I'm actually nervous about it. I hate confrontation. I'm starting to wonder if he thought that I was doing too much of my own research and made up the symptoms in my legs.
My husband is coming with me tomorrow for support and to vouch for me in a way too. I just wanted to thank you all for your support and I'll give an update after my appt tomorrow!
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