Just Venting

[Guest guest]

So I was set for surgery with Dr. Frim for June 28th. Then I saw him back in

April due to having more problems with my legs. He wanted more MRIs (which I

did) then we met and he told me he had been sort of expecting to see a syrinx

somewhere but all looked good, no change in my herniation, etc...He wanted me to

see Dr. (neurologist) and see what he thought. But Dr. Frim made it plain

I was still really in what he would consider a grey area and surgery was up to

me. While I think he is the peach at the top of the tree, it was plain to me and

my husband he does not think I should be seeking surgery " yet " .

Off to Dr. I went and some interesting things have come out of that...my

reflexes are asymmetrical (worsening from when this all started)with my weaker

and problem side (the left)showing. Now I am waiting for a 48 hour ambulatory

EEG to see if I am having some sort of seizure. Sometimes, when my symptoms kick

up especially in the middle of the night, my upper left shoulder, face, jaw, etc

not only is there pain but it all stiffens up and it feels like someone is

pushing into my chest. Then when it lets up all of that releases some. After the

48 hour test they are doing some more nerve conduction studies (again). I am

just tired.

I went back to work in April and became permanent again with another company two

weeks ago. Of course, as luck would have it, we got 2 solid weeks of bad spring

storms and I have been miserable....trying to suck it up and hide it from my new

employer. The first week, I had heartburn and reflux that nothing could

help...didn't matter what I ate or drank or what remedies/meds I took. As the

week wore on and the storms let up this heartburn/reflux started to lessen. This

also occurred with some hormonal things that always seem to aggravate things but

this past 2 weeks was by far the worst. I lay in bed one night, wondering if I

was going to die the pain was so intense in my chest, arm, neck...even down my

abdomen and leg all the way down into the sole of my foot on my left side. This

week the weather had sort of let of and I was feeling better. I am sure the

stress of being at a new job and full time is not helping.

This evening, the weather took a turn with a bad storm. I had sort of felt it

coming yesterday. Then my husband and I come home (we had taken the kids out for

pizza)and I notices in the car that I had some swelling in the back of my neck

on the upper left side. I have started to notice that every now and then when I

am near my period I will swell a bit in the face but more so on my bad side.

This was the first I had this puffiness in my neck. As I got out of the car, the

oddest sensation/attack/near passout I have no idea how to describe it it

happened so fast and left me so shaky. Weird sensation in all down my body, legs

shaking, had to get inside and lay down. Lay there hearing the storm going on,

trying to sleep while it felt like I was having some internal buzzing/shaking in

my head. Now here I am in my usual middle of the night wake up...only now the

neck swelling is gone.

I am so tired of this. So tired of being afraid of what is going on in my body.

So tired of jumping thru the hoops to others will know or validate how sick I

feel and know I am.

Personally, I think a few things...One that where my problem side and area are

is doing some over stimulation of the Vagus nerve at times which is causing the

nausea whenever I eat, the reflux that nothing can help but always resolves on

its own which is why I get pain I can sometimes trace down my body as if

following a path. Perhaps why I get a slowed pulse then it suddenly shoots up.

Then I think I have a tethered cord no one is seeing on MRI and until I am so

messed up in terms of bowels/elimination and the worsening problems with my legs

no one will go to that possibility. And maybe some of this is effecting my

hormones and thyroid too as things get squished.

I am tired of doing all of the work on this. I am tired of being medical

detective and I am my own case. But mostly I am tired of being afraid of these

worsening problems and weird intermittent attacks. Like I cant trust my own

body. I think that sums up my rant.

Lainie