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11/06/2009 05:15 AM

Legs giving way

Aimai
Aimai  
Posts: 16
New Member

I don't know if this is technically the right place for this, because I've not been diagnosed with MS, although have had lots of tests. I did write on these forums when it looked like I would actually get that diagnosis, but my third MRI was unchanged so it is unlikely.

Anyway, does anyone else suffer from their legs just giving way? I think it is just muscle weakness, but it's been happening so frequently the last few weeks. My GP only told me to do pilates, which I was not impressed with, as it doesn't give me much info about how I can manage this. I don't understand why my legs should suddenly decide to go this much weaker recently either. I have had them do it before in the past couple of years as I've been recovering from what is still tentatively diagnosed as encephalitis, but why would they get worse?

Does anyone know how to manage it? I will just be walking along, and the next thing I'll be on the floor. They give way at the knees. I can get up after but will probably fall down within the next few steps. Going down stairs generally makes them very wobbly too and can set this off. It's so frustrating and embarrasing!

Any advice would be appreciated. Thank you in advance for your help. Smile

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11/07/2009 05:57 AM
elseaeff56

Dear Aimai,

Before I can even address your malady, I strongly suggest that you carry a cane - not under your arm or in your purse (collapsable cane) but I mean find yourself a cane (you can find them at pharmacies and department stores) and never be without it. That will give you some stability while on your feet. You have the option of getting a cane with just the one tip, or you can get one that has 4 tips and stands by itself -- which would give you something more solid and sturdy to hang onto when/if you fall. I know how hard it is to be young and have a cane, the illness seems to be 'punishment' enough, than to make you use a cane?

I have had MS for more than 20 years and my legs/feet and arms/hands become so numb that I can't feel them and In turn, I am often breaking them because I can't feel them and my balance really stinks.

Have you seen a neurologist or are you only working with your primary care doctor? Whatever is happening to you seems to be eminating from your central nervous system (CNS) a favorite site of attack by many different cns disorders from MS to parasites. Don't laugh, my friend and I (always camped together with our families and after one weekend, at a new camp (for us). It rained all weekend, a tornado took off the roof of a bowling alley which landed about a quarter of a mile from where we camped. What a mess! Everything was covered with mud and guck and we packed up and made sure there were no tarantula's in anything (they are prolific in this park) and went home. She and I were sick as could be for days and I gave up and finally went to the doctor. He took some samples and sent them to the lab and when the results came in, he told me I had a parasite in my blood system. I had to have picked it up that weekend camping, I was no where else. My friend found out the same thing from her doctor. These parasites caused us to have 'the runs' or as my daughter so delicately puts it, "Mom, I'm melting today!"

My point is that my doctor was searching in the wrong place to find what was causing me to be sick. He ran tests for all kinds of things, but it wasn't until I just off the wall mentioned camping at Mineral Wells that he checked for parasites. But it took him a week of tests and studies trying to find out what was causing my problems when he was looking in the wrong place.

Perhaps your Primary Care Physcian is looking in the wrong place or looking for the wrong thing. Primary care doctors are great for most everything, but there comes a time when you need a specialist to start checking your cns for other reasons for your symptoms. MS isn't the only disease that causes you weakness in your legs.

I have also taken a step and found that my leg didn't know that I was walking, it was numb and all rubbery. It stays that way for weeks or until I'm given some solu-medrol, a very strong steroid that is used to calm your immune system so your body can heal itself.

If you could give us some more information, type(s) of doctors you've seen, tests you've had done and medications you are taking). Sometimes doctors are limited by their own studies and aren't aware of the same things that perhaps a neurologist does.

Whatever you do, always make sure to get a second and a third opinion on your diagnosis. Doctors misdiagnose all the times. Any doctor worth their salt will welcome the validation of their diagnosis, so don't be afraid to tell him you are going to do that. If the answers are the same, you have a winning dx!

I hope what little information I've provided will help you. With more information, perhaps any of the members here will have more information for you.

Your comment about not knowing why this is happening to you is the same question we all ask. Why me? In addition to the MS, I had a mastectomy for Christmas. Why me? I have MS already! All the horsehair shirts to punish ourselves for whatever it was we did for this to happen won't help. But there's really not a cause or fault in these cases, just an immune system gone haywire or some other thing gone wrong that your GP has no idea of.

Your GP was right about Pilates. Pilates strengthens your body's core which, in turn, strengthens the rest of your body as you do them. I have used Pilates since the day I was told I had MS in 1988, my neurologist gave me info about it. I discovered the benefits of exercise at that time. It did help that my brother was professionally body building at the time and he had me at the gym every day until I had lost all the fat on my body and the bumps and lumps became muscles and I regained all control of my left leg and foot and had to tell him he was right.

Write a list of all your complaints with two columns. The first column is what is happening to you on the day you start (a copy for the doctor is good) and keep track of how you feel. If you go to the gym or just work out at home for 30 minutes a day you'll be stronger and feel great.

thanks for writing, don't forget to do so again when you hear from your doctor(s).

Regards,

Linda

I recommend, as a member of MDJunction, not as a member of the medical society. I am not a doctor, social worker or therapist. I make suggestions based solely on my own experiences.

We at MDJunction are glad you have come to us and that you are willing to share your experiences with us. Everyone here have different stories and welcome yours! If you have had a bad day, pull out the soap box and start preaching to the masses or vent as loud or as long as you want, we're here for you. If you just have to speak to someone, we're here for you.

Please take care of yourself


11/29/2009 10:23 AM
Aimai
Aimai  
Posts: 16
New Member

Hi Linda,

First of all thank you ever so much for your reply, and I'm sorry for taking so long to get back to you. I've been buried under work and as reading equals headaches, I've not been on the computer for pleasure!

I did have a cane. I should find it. The thing is, I never used it. I would fall over and struggle... which I know is not wise, and I can't really explain why I would do it. Most of the time I've had someone with me, which is great, as they have supported me and been really helpful. Such a pain though.

It did get better for about two weeks. I took a really long weekend and didn't do much, which really helped, so I think it is linked to tiredness.

I have seen a neurologist, who gave me the diagnosis of ADEM (type of encephalitis). Although further symptoms did mean we were looking at MS for a while, but my second and third MRIs were unchanged, so I have basically been waiting for it to either go away or something serious to happen so that it shows up.

How did you find Pilates? I'm still waiting for a friend of a friend to get in touch about it (hoping for mates rates). I did put it on the back burner for a while because, as I said, it was better for a short while.

I am having hypnotherapy- working on beliefs and that, which I am hoping will have some sort of effect.

Hope you're ok. Thanks again for your reply. Smile

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