[noheavenorhell]

Hello, im new. Im here as the same im sure many start off as, its a mystery. In fact, even when it started is up for debate, either 3yrs ago, or a year ago. The worst has been this past year though.

Back in 2009 I had a slow developing headache that turned into a full on migraine, which lasted about 3-4 months, SOLID. Yes, nothing helped it. In that time I developed "twitches" uncontrollable blinking, head jerking, sunglasses 24/7. It faded, yet has never left. I still have daily severe headaches with 2-3 more migraine like a month. The light sensitivity varies but stays with me. No cause has been found, it just is. Though I do have a 3mm cerebral tonsil herniation, but no one considers that an option.

Now, about a year ago, I have started a slow (or not so slow) down hill slide. It started with a little arm pain and weakness. Which was assumed to be related to a bulging disc, perfect sense. Well that weakness got bad, the spasms were my neck, all the way around even the front, down my arm, other arm and back. I completed P.T. which the 3x week massage almost seemed to create MORE knots. Even they said, whats your doctor saying, this is unusual... By then the other arm was weak (EMG proven) He sent me for the steroids in the neck... I had 4 total. Nothing. I then developed them aweful facial twitches again? (this is why its question related when the headache started)

So it settles into my "new normal" you adapt you learn to go on, maybe this will get better... So the past summer, I had another episode. The spasms reach extremes, it starts to affect my leg, same side other started on the arm, my right. It eventually drifts to the other side too. Even so, there is still an obvious right sided dominance to this. But, still affects the other side a lesser degree. My neck is always spasmed to a degree. The rest, get knots when I use a limb to much, or at all it seems sometimes. I again carried on. Its now really affecting my life in major ways since even my legs are weak heavy and spasming.

That brings us to about 2 months ago, another episode started. It increased weakness all over. I can stand about 30min. I no longer can take care of the house very well. My legs often feel "detached" esp the right. Its not necessarily numb, I feel my foot on the floor and if I touch it, but from the knee down.... if i didnt look at it, it dont seem its there at all. I also had another episode of facial twitches, but there were some new ones. A strange mouth thing im doing, mid cheek thing, brow furrow thing along with the blinking eye twitching and head jerking. I do have some hand tremors. I wake up shaking head to toe it seems too for a bit, then it settles.

This past week... new things. Which are scary. Am I having TIA's, or, is it whatever is wrong? Dizziness. Odd one though, like slow motion, wobble, walk sideways? Dark vision, fuzzy vision, tunnel vision, it varies. Then this past Saturday I woke up and half of my face was numb. Even half my tongue. ..... and my arm and leg. I could barely walk that day. Then next day (sunday) face still numb, down side neck, arm leg is off and on not too bad. BUT, I could not hear out of the ear on that side!? Ok, monday still my face, I can hear again, and its all off and on otherwise. Today, I had hearing loss on the other side for a few min, thats it. Followed by the bad side, again, few min. Then, they both were fine. Still more dizzy spells. I am not thinking right, confused easy, ect.

My doc is trying get me in for a CT, maybe by Fri. To check my brain. He has not taken me serious enough the entire time and has been trying to get me into a rheumatologist assuming Fibro. He FINALLY done a small neuro exam Tues when I was there and was shocked. He is concerned with TIA, but otherwise realizes finally something is really wrong. I found things in the neuro even I didnt know didnt work right and that was mostly just my face and tongue. I know I dont walk right more than half the time I find myself walking toe first or curved in and on side of the worst side, the right.

That is my very long intro... right up to today Your a saint if you read it all. I have no clue which forum I belong in yet. lol So as im on this journey I hope to help and be helped by many!

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Rrae]

Welcome to NT!

You've come to a wonderful place for support and understanding. I know how frustrating it can be having all these symptoms and not getting any answers.
You'll get good feedback here, so feel free to post in any forum(s) you feel inclined. There is alot of good information at the top section of most forums called the "Sticky's" - very helpful!

It's great to have you!
Just holler if you have any questions

Caring,
Rae

[Dmom3005]

Welcome to Neurotalk.

Hope you find some help in the rooms.

Donna