symptom cant describe

[aprilmitt]

I am having so much trouble explaining my symptoms to a doctor. Here it is and if anyone can put words to what I'm saying so a dr would understand, Id be grateful

I get a tingling feeling in my arm so I know the episode is about to begin. (MRI didn't show seizure activity or stroke and no new lesions) The feeling in my left arm only is like a heaviness beginning on the top of my arm almost to the bottom and it lasts during the entire episode..1 hour! AFter my arm starts feeling heavy I get like a feeling in the middle of my forehead like a pulsing and my eyes get screwed up. I can't focus on one object w/o it feeling like it's jumpimg around. This is what I can't describe.. It's so frustrating cause I can't explain what I'm feeling. Im not dizzy.. it's like my vision is going up and down like a pulse. sometimes I feel a pulse in my right ear. I was on 100 mg of Tegretol but my dr upped it to 300mg 2x / day now. It's not helping. My ms dr wants me to see a seizure specialist altho she doesn't think it's that. She thought it was a paraxymal symptom but whatever it is , we need to control it. Episodes tht last an hour and come on out of nowhere are debilitating. What if it happens while driving or at work??? If anyone knows what I'm talking about, please help me put it into words that I can explain to a dr.. thanks!

[Seasha]

Hi April - I'm sorry you're having a rough time. I can't address the heaviness in your arms, but the involuntary jumpiness and jerkiness of your vision sounds like nystagmus.

I had this as one of my first MS sx many years (26) ago along with eyes scrolling up and down vertically over and over again. The left to right nystagmus came afterwards and only happened when I turned my head quickly to the right or left. The scrolling I likened to the old TV sets when you had to adjust the vertical hold to get it to stop. Talk about trying to describe it to my Doctor! He looked at me like I had TV antennas coming out of my ears too and told me I must be having a nervous breakdown. Wrong!!

Here are a couple of articles about nystagmus: http://www.rightdiagnosis.com/medica...movements_.htm

https://en.wikipedia.org/wiki/Nystagmus (this one shows a video of someone's eye that has it) Does these explanations shed some light on what's happening with you?

This could be an indication of MS, but clearly I am not a Doctor. I hope you can find something to help! I know from experience how frustrating it is

[REG53]

Hello aprilmitt, I am sorry you are having bad sx's. I have feelings of heaviness in my arms off and on but doesn't last long. I also had the same eye jerks you are describing. I could not focus because the word would jump. I went to the eye dr. but he couldn't find anything wrong. As for me, I believe it's a sx of ms.

[aprilmitt]

Thank you for responding. REG53...did the MS dr give you anything? How long did it last each time? Mine are like episodes. they last for about an hour, then all clear!

[REG53]

No, I don't take any meds. for heaviness. I not sure there is one. The heavy feeling in my arms will only last about 15mins. Sometimes when I wake up it feels like someone is holding my arms down, it feels that way until I get up and start moving around and sometimes it feels like I have a lead blanket covering me, very strange.

My legs feel like I am walking with weights on, that never goes away.

I do take baclofen for muscle spasms

I hope your Neuro. gives you some answers. Let us know.