Hi everyone,

I hope you are all doing well!

I have been having some really serious issues..

It's super hard to explain but I will do my best...


You know when a limb falls asleep and the blood starts to circulate again, that horrible feeling that comes about as the blood starts circulating?

Well I am getting these 'rushes' bout 2-3 every hour. I can feel it start to approach my body and have about 2 seconds to find something to hold onto or sit down.. if I don't I will collapse while these episodes happen.

They last about a minute-minute and a half..
My left hand cramps up all weird like and so does my left foot.
And that horrible feeling like when youre limbs are waking up happens mainly on the left side of my body, along with both of my legs.

It's quite a horrible experience. And has my boyfriend super upset all the time. They were scary at first, but I've lived through so many of them that I just try to breathe it out as they happen.

I was kind of thinking maybe it had something to do with the autonomic response system. I just have no clue.

My boyfriend says I breathe like a drunk person that's about to throw up while its happening and I have also noticed the left side of my face 'cramping' up as they happen.

Has anyone experienced this or possibly know what these episodes could be?

They're becoming far more frequent nowadays and are really taking a toll on my body
:-/

Thanks for your thoughts

That sounds awful, Ayna!

Could it be some kind of seizure (left sided)?? Just a guess. I have never had or heard of this. Sorry.

ANN

Sheesh, scary.. I don't know, what does your Doc say?

Have your boyfriend video you during an episode to show the doctor. A picture (or video) can be worth a thousand words. Hope you feel better soon.

I ended up at the ER yesterday.. Not really by choice, but because I had another episode that my boyfriend saw and tore him up and he insisted I go..

He said that when something cramps you can stretch it out. He was trying to pry my hand open during the episode and literally couldnt get any of my fingers moved. he said it was far too scary to witness. So to make him happy, I went to the ER.

Of course, I was treated the way I had expected to be treated...

sigh...

I saw a nurse practitioner who believed it to be seizures and contacted 2 other doctors who believed it to be seizures as well... finally talked a resident neuro into coming down to the ER. He blew me off like I was crazy. And said that 'cramping is normal with ms'. I explained to him how I have discussed it with other patients who had never heard of such a spell along with posting here on neurotalk with no similar situations.

I of course only had one spell while i was there.. i hit the nurse call as soon as i felt it coming on, but it was so powerful that i couldnt speak to them, so no one came to check on me.. by the time a doc was in the room it had already passed...


So the resident neuro wrote a script for medrol pills.. Never done this stuff before... its always been solumedrol iv drips then prednisone to taper off...

Took the first set of 4 this morning and napped... Still having episodes, but notice my back muscles arent in *as* much pain.. It sucks cuz these pills already have washed my face out so heres another holiday season where I come to xmas dinner looking like I'm dead...

I am genuinely concerned about the health care system here in Illinois..

This is why I stay away from doctors and work as my own doctor. I feel I know more about myself than they do and they always shrug me off like I am a hypochondriac.

I can't wait to find someone that is willing to listen and help me.. I just fear that day will never come.

Do you have a regular Neurologist? Or a regular PCP?

ER doctor's only see you for a few minutes once.....and usually never again.....so they give the most logical diagnosis that fits whatever you've got going on at that specific moment. So, unfortunately, you never actually get what you really need.

I've had muscle cramping before and even in my hands but never to the point that I couldn't open my fist. What you're describing actually sounds like a seizure. Not sure about the steroids that were prescribed for it.

I'd keep track of how often these "spells" happen and show the next doctor you see so they can have an idea of how often they're occurring.

I hope things settle down for you.

Ayna-

When they give you a script it is fair to ask- "What are you treating?" How does medrol treat L sided seizures? Did no one want to do an EEG? Or an MRI- I don't remember when your last one was.

If they think it is not seizure activety but "MS," what are they treating? What symptom of MS is it- what is its name?

I am as curious as you are mad. I'd like to see that ER note.

I hope the steroids help- sorry about the moon face.
ANN

I just met my new pcp the other day. She seemed okay. I had an episode after she did the whole strength test thing, so someone in the healthcare world witnessed it happen which is good I guess..

She said she would make a rush appt with the first Neuro she could...

So I won't be seeing anyone until February.

What a flippin joke.

So now I guess I sit here and wait and deteriorate into a pile of crap. Sigh.


I wish so much I could move to Colorado and get the help I need..

There's an ms clinic thing where you stay and they evaluate EVERYTHING and give the therapy needed for each issue.

If these are seizures I am certain they're caused by that big lesion in my parietal lobe.

But I'm not a doctor and know nothing.

I hate this state.