Does This Sound Familiar?

[bac733]

I am brand new to this site, I have looked over it and everyone seems extremely nice and I'd love to be a part of it. Except, nobody is sure of what I have, and I was wondering if any of you could help point me in the right direction of where I should go. I've been to two neurologists, have had an MRI, 24 hour EEG, and just a 60 minute EEG done, none of them showing anything to conclude partial seizures. But...

This usually happens when I stand up/have been sitting for a while. I can feel when it's about to happen. Not as it happens when I do a certain thing, but when I move my right leg to the right, it usually tends to happen, but it can happen anytime, this is the most noticed. I get a weird sensation in my leg, which then tightens, and leads up my arm, causing me to out stretch it (this is usually with kind of jerky movements), and my fingers out stretch. Then, my fingers (all except my pinky) kind of clench together, with my arm tightening towards me. It's hard to speak and walk while this happens, but it only happens for about 20-30 seconds, some days 10x plus, or just 1-2 a day. I have not had a day in 1.5 years where it hasn't happened. Sometimes, if I try to "stop" the whatever-it-is happening, the left side of my body is affected too. This has only happened 2-3 times, but it's much more 'weakining' as my body seems to kinda just fold, I have to lean down, and my eyes shut tight. I can say that most of the time this happens, it does involve me picking at my clothes (but I really can't tell if it's me getting annoyed with it happening and trying to stop it or it). I have heard of sensory tricks but none of them seem to work.

Hopefully somebody can point me in the right direction of where to go with this.

 

[jyearta]

Hi and welcome to CWE.

I'm sorry I can not tell what your symptoms sound like.
My seizures don't sound anything like yours except for the picking at your clothes.

I just wanted to encourage you to look into all the forums and ask any and as many questions as you like.

Don't stop until you get answers. I have seem around 7 Neur. in all.

 

[Nakamova]

Hi bac73, welcome to CWE!

Have you been evaluated by a cardiologist? There may be a blood pressure/circulation component that is contributing to your symptoms, since they occur after you you've been sitting, or after you stand. If the tensing is related to circulation issues it may help to "pump" your legs before standing up -- this consists of moving both legs at the knee in a kicking motion about ten times.

It could certainly be neurological in origin as well. Muscle tensing and jerking can be a form of myoclonus, which can be seizure-related. You might want to try adding a magnesium supplement to your diet -- it plays a neuroprotective role, and is also helpful for reducing muscle tension throughout the body. An iron deficiency can sometimes be a contributing factor, so you might want to have a basic blood work-up done. Make sure you are eating and sleeping healthily overall, and minimize or avoid stimulants like caffeine. It might also help to practice muscle relaxation exercises along the lines of gentle yoga. Massage might help too. Since your symptoms have been occurring every day, it should be clear fairly quickly what is helping and what isn't.

Best,
Nakamova

 

[Cint]

I agree with Nakamova as it does sound like it could be a cardiovascular problem. Or long term diabetic neuropathy can cause this, also. Have you had an overall blood work done by a cardiologist or a endocrinologist?

 

[lzwtsn]

I've had weird sensations like that, but with my neck. I've discovered it is directly linked to my epilepsy, and changes in my meds have seemed to eradicate the problem. They were never as severe as yours, but sometimes knowing you're not alone can be helpful. Definitely check with other specialists like the last two people have suggested, and good luck, I hope you get answers quickly!
Best!

 

[bac733]

I meant to mention that I'm only 18. Sorry about that.

Thanks to everyone who has replied.

Nakamova, I have tried to stretch my legs quite often and it really does seem to help with the muscle tension, but sometimes it will still inevitably happen. I have had some basic bloodwork done, and all test show that I am perfectly healthy. I take vitamins everyday and try to stay the least stressed/worried about things. The doctors say this may be anxiety related but that just makes me more anxious about it happening because I feel a little anxious every now and then.

I meant to also mention that when I was younger, I remember this weird sensation happening in my leg when I was running. None of it ever lead to my muscles in my right arm to tighten. This also happened a few times when I was playing drums, the tension in my leg before it became more frequent.

 

[Nakamova]

Keep trying to find ways to lessen your anxiety -- whatever the cause of your symptoms, anxiety will make them worse. It can help to meditate for a few minutes several times a day. And by "meditate" I mean just closing your eyes and thinking about your breathing, with slow exhales. And progressive relaxation can help: Lie down, and progressively tense and relax your muscles, starting with your feet and moving all the way up to your head and neck (You'd be surprised how tense even your forehead can get!.) Go slowly, exhaling with each relaxation.

It's great that you are basically healthy. Your vitamins probably cover this, but if they don't include magnesium, do consider giving it a try.

I experienced a lot of tension in my left side in the year leading up to my first grand mal seizure. It's hard to describe the exact feeling, but in hindsight I do think it was related to what may have been happening in my brain. So you're right to pay attention. Keep a diary tracking your symptoms. Look for patterns -- time of day, certain environments, are you hungry/thirsty/fatigued beforehand, etc. If the symptoms are increasing, that's worth noting too. I hope you get some answers and/or some relief soon.

 

[bac733]

Thanks a bunch!

The doctor told me that this does sound kind of different from a partial and a little bit different than dystonia.

Whatever it is, I hope to find out soon. They never happen in the morning which is quite odd.