Facial twitching and right-sided perceived weakness

[Guest]

Corny...I know, but I have lurking around and reading for a couple of months now, and figured I should introduce myself.

My journey started about 7 months ago with facial twitching and right-sided perceived weakness. I have had a diagnosis of fibromyalgia for about 20 years, so am thus an hyper-vigilant, hysterical female. I have never medicated for the fibro and really haven't had too many issues. Until this past year.

My doctor referred me to a neuro, and I am seeing one of the best (particularily in ALS) in Canada. He was almost certain I had MS because of some of my symptoms. He sent me for an MRI because he found right-sided problems with deep tendon refelxes (hyper) and myoclonus, with an increased sensory reflex. The MRI did not show MS, but did show a small convexity meningioma (benign brain tumour) in the frontal lobe and some white matter changes. The tumour thing freaked me out a bit, but we are on watch and wait because the cure is worse than the condition at this point. The neuro said it would not be causing the symptoms that I have...bummer, would have been too easy.:-?

He is still not convinced that I don't have MS, so I am going to see another associate of his who is a specialist in Movement Disorders, and then on to a lumbar puncture after that. That's not for a couple of months (August) and things are steadily getting worse - no doubt aggravated by being in limbo. My entire right side is losing strength and always feels "on the verge" of a cramp. I seem to have a permanent charlie horse in my butt and my right leg is obviously decreasing in size compared to my left. Walking can be a challenge because the leg seems to turn into a stilt (very stiff) and then the cramp hits. Occasionally I feel muscle flutters, particularily in the evening. In bed, sometimes my leg "hums". Not numb, but a strange feeling, like TV fuzzies.

Gettng through a whole week at work can be difficult. I become so "tired" of draggin my ass around that I seem to hit a "wall" where it's all I can do to keep myself from closing the door to my office and sobbing. Sometimes I have to leave so I can, I just can't help it. Not just your run of the mill boo hoo, but great whopping keens that make you want to bite a towel to keep yourself from making too much noise. At this point, I honestly have peace with whatever is wrong, even if it's just my fibromyalgia on a tear. Whatever is going to happen...will.

In any event, of course I googled about and found you all, and have since been following your journeys and appreciating the particular wisdom and patience you all show to visitors. I guess I needed to blurt that all out so I don't feel like such a stranger.

I very much appreciate that you are here. :-D

Lori

 

[Guest]

Hello Lori, welcome to the site

It does sound as if you're in a bit of a panic. I guess I should ask you a few questions and maybe all of us on here can help you a little better.
What part of the frontal lobe is your meningeal tumor located (motor or sensory)? Do you know how big it is and where in the meninges it is located and if it is pressing into your cerebral cortex?
Do you have myoclonus or clonus? Sometimes people get these confused.
Do your symptoms come and go like they can with MS?
What kind of sensory symptoms do you have?
You say you have weakness on the right side of your body: the entire right side of your body? How did you notice it? Is this feeling like 20 questions yet?
What part of your leg is decreasing in size and how quickly is it happening? How long after you felt weakness did you start to notice atrophy?
Has there been any mention from your neuro of doing an EMG?
I think I'll stop there. That should give you carpal tunnel after you get done answering all those questions.
I know it's difficult to remain calm when you think you have something like ALS, but please don't jump to any conclusions. Believe me, self-diagnosing almost always takes you to a very dark place. Let your neuro (who you said is one of the best) guide you.

Take care.

 

[Guest]

Lori, you made me smile as I read your post, not at your situation of course, but your attitude. You seem like you're handling it all quite well. (and I understand the part about having a good cry too, its just so frustrating!) I just wanted to say welcome, I'm a newbie too, and have learned much just by reading. I hope you get some answers soon. take care,

 

[Guest]

Thanks rose..

Not really panicking quite yet wright, just exploring possibilities and hoping for the best.

Tumour is located in right middle frontal gyrus (which is being slightly impressed by the lesion which is 1.2 x 1.4 cm in size).

Not sure about the clonus thing...Neuro just said something about it. I am thinking myoclonus as it is sudden and not sustained.

Symptoms have bee failry steady for the past year...no periods of "better" that I can pinpoint

Sensory symptoms...I often have what I call "attack itches", only isn't really itchy. Feels like a sudden itch which will make the affected area jump or twitch. I also have these "jerks" in reaction to various stimuli, including aural and tactile.

Right sided weakness has been very slow and still is not hampering me much. I have just noticed a changed gait (slower and stilt-like, almost feels like my right leg is longer than my left) and difficulty with stairs. The leg doesn't want to lift and is less than stable while climbing the stair. Although right-handed, it has become less useful than my left. Writing is difficult.

Atrophy...tough one. I first noticed a difference when I tried on a pair of shoes and the right foot was at least a half size smaller than the left, which is not usually the case. Someone else noticed the difference in the back of my leg - the calf, Although they thought the left leg was swollen. The difference is mostly in the foot, ankle and calf. The ankle is quite noticeable from the front and the back, while the calf is far more easy to note from the side and the back. It is very odd looking, compared to the rest of me...lol)Not sure about the timing. I didn't notice the atrophy thing until vary recently, say the last month.

The neuro did a NCV which, by the way, made me miserable for about 3 days with twitches and a headache. He did a quick EMG on my face, but decided that his associate can do more in depth in the clinic.

Thanks very much for your assistance wright, I am aware of your background and appreciate that you take the time to help people. I am pretty cool with que sera sera. If I can't have answers, I at least wanna know the right questions and if I do get an answer, I want to know what to expect...I'm not a big fan of surprises.

Thanks again.

 

[Guest]

Atrophy question

Atrophy...tough one. I first noticed a difference when I tried on a pair of shoes and the right foot was at least a half size smaller than the left, which is not usually the case. Someone else noticed the difference in the back of my leg - the calf, Although they thought the left leg was swollen. The difference is mostly in the foot, ankle and calf. The ankle is quite noticeable from the front and the back, while the calf is far more easy to note from the side and the back. It is very odd looking, compared to the rest of me...lol)Not sure about the timing. I didn't notice the atrophy thing until vary recently, say the last month.

The "shrinking of my right leg seems to be continuing. I can't really get an accurate measurement anywhere but my ankle and just below my knee, but the difference is now a little more than 1 inch. Is there any other explanation for the difference in size?

 

[Guest]

Chugging along

Walking seems to be getting more bothersome...it's almost like my upper body is moving forward while my legs try to keep up, kind of a duck waddle. "shrinking" is starting to look almost deformed with dents where they shouldn't be. Occasional twitching in my foot and knee.

Recently I have had hand issues...my left hand was twitching, but it was odd because it was like a "sucking" in and out on the side of my hand. It has lessened in intensity (or I have become used to it) but it is almost constant. My GP looked at it and said it was "muscular" and not nerve related, he seemed unwilling to discuss it with me, although he said he could give me some quinine, and said that I should show the neurologist. My appointment is August 6...so I am waiting...

Best of the day to all

 

[Guest]

Hi there!

What do you mean by dents? do you mean like cellulite? I have a indentation on my ankle that is noted by all. But i noticed on my legs (shins, wich are thin) that it looked like tiny little dents almost like cellulite? I saw it on my legs also. Please note I am not being weird, I am thin (120) and never had cellulite. It looks like tiny dents on my calfs. my calfs have lost so much mass that I have stretch marks on them! they are thinning but it appears at the same pace.

I also had the sucking in and out on my hand. I describe as a pull and release. it was constant but only lasted for 3 weeks. I had an emg on that arm/wrist and it was fine.

Also, i felt that feeling of almost a cramp but not happening. I never knew that anyone else had it. not on my one side but it would happen on the right side of my face. and sometimes on the left foot.

Just thought I would share. they thought MS awhile back due to lesions on white matter. but It is not that.

Take care and best wishes..ps. my left thigh is one inch smaller than right.

april

 

[Guest]

*sorry had to chuckle*

No, not dents like cellulite (I have plenty of that too). The skin is "sucking into" the bones of my foot, ankle and shin. It kind of looks like there is very little between the skin and the bone.

Good luck April!

 

[Guest]

Sorry, I really do say alot of lame things! Always good for a chuckle!

I was just wandering, I have alot of shrinking on my calf also. My feet are smaller than last year. I have a problem with my left leg, it is weak and stiff with a crampy feeling. I feel funny when walking and my foot/leg kinda slaps down when I walk. and when i walk my toes on that foot cant be felt the same as other side, i cant move them the same. In the light I noticed that it looked different. (those bumbs or dents---they are different than the indentation on my ankle)

well sorry. I just thought that i could relate a little with the leg thing and the contration on the side of hand. I wasnt calling you fat..lol...I just always hope that all the things I have or notice are just anything other than what I think.

take care

april