I'm not attached to my body

[flutterbee]

Something is wrong. I don't remember Saturday. I very vaguely remember talkiing to Janet and I remember that I felt really 'frontal'...like my frontal lobe was just air. I don't know how else to explain it. I talked to at least 2 other people on the phone on Saturday and they said I sounded tired, but otherwise ok. I don't remember talking to them. I've just been really out of it.

easy child stayed home from school yesterday and made an appointment with the GP then took me. I've had this horrible headache since Thursday. I had it last Monday, but not Tues or Wed and woke up with it Thursday. And my back got a lot worse - intense spasms, weakness in legs, other stuff that's kinda embarassing. GP is getting me into another neurologist. Got a lumbar spine MRI and gave me a toradol shot (really strong NSAID - no narcotic). I sletp for 8 hours after the MRI. Headache came back. It hurts to move my eyes. Took some pain medications which she said I could do. Slept for 7 more hours. GP did a neuro exam and reflex in left leg was weak. Don't know if that means anything.

I needed a wheelchair to get back to radiology at the hospital. easy child had to get me in and out of the car. I got off the bed at the GP's office and kept going down onto my knees. My legs were like limp noodles. That was also after the shot, so who knows. So tired. So weak. Still running a low grade fever - almost 2 weeks now. Lost 4 pounds since last week.

I still don't feel attached to my body - in my head. I really don't like this. I'm scared and trying not to freak out. Calling my GP when they come back from lunch.

 

[crazymama30]

This sounds very scary. Hugs, and make sure to call the doctor. If it gets worse, call 911. Sounds like they need to figure out something.

 

[Star*]

Wynter -

GET TO THE HOSPITAL - what you described sounds like what I had when /before I had a stroke.....

NO WAITING GIRL -

CALL 911

 

[Hound dog]

Heather if you're feeling like you did before when we talked........I'm with Star. Don't play around and call 911. This is serious and needs to be delt with NOW, not later.

(((hugs)))

 

[flutterbee]

MRI was normal. I can't believe this. How can I have so many symptoms and everything come back normal??? How can I have problems with bowel incontinence, weakness in my legs, spasms all over my back, numbness and tingling going into my right arm and hand and everything come back normal??? Working on getting me into another neuro. Asked me if I wanted a referral to a psychiatrist. Why do I need a psychiatrist? Cause you're depressed. I'm not depressed. I'm sick. Sorry if I find that distressing.

I can't stand this. I'm giong back to bed. I might not ever get out.

 

[Hound dog]

Heather

That MRI was of the SPINE. So you don't have an issue with the spine. Good. It's ruled out. So what? Doesn't make your symptoms less real. Push that 2nd opinion with a new neuro.

Happens again, go to the ER. Maybe a fresh pair of eyes and another brain when you're smack in the middles of symptoms is what you need right now.

With symptoms you're having, phhht I wonder why you're not doing a jig around the house. sheesh!

(((hugs)))

 

[Steely]

Heather, please go to the emergency room, and tell them you are not going to leave until they figure out what is wrong with you. Period. It sounds neurological - and an MRI is not going to show that.

Who can be your advocate right now? easy child? Your Mom? Somebody needs to take you to the hospital and not let you leave until they find the problem - even if that means calling in the best doctors from throughout the entire US.

I will be praying for you girl. Stay strong.

 

[ctmom05]

It is terribly unsettling when medical problems don't seem to have a solution, and scarey too.

If you are able to do this, jot down your symptoms every few hours, just so you have something to tell a new doctor if you decide to see one....and it sounds like you should.

I know your GP is not the person to diagnosis this, but they can often be a useful liaison between you and other medical professionals. Call and ask for help, you need and desrve this.

 

[mrscatinthehat]

Sending hugs. I agree if these things continue the ER is the best bet.

beth

 

[gcvmom]

So has ANYONE taken an MRI of your BRAIN?! Take the offer and GO see another neuro! This is just crazy that they say nothing's wrong with you!

 

[KTMom91]

I have to agree with the others. The ER sounds like the best bet. Feel better, Heather!

 

[Jena]

Hi,

I'm soo late to this!! Soo Sorry.

So, i'm with everyone else, you havent' been well in a while now. Go for second opinion, and head to er if your feeling that way again.

Let us know how you are......

 

[susiestar]

i hope you have gone to the ER. If not, GO!!! These symptoms truly sound like a possible stroke, or else maybe MS. If it is either one you need treatment NOW.

Sending major hugs, and hoping they can get you fixed up.

 

[flutterbee]

In these days of insurance controlled health care, there is no more going to the hospital and staying until they figure it out. It just doesn't happen. The doctor's office asked if I wanted to go to the ER and I asked why...no one knows what to do so they do nothing.

I cannot believe that the lumbar spine MRI was normal. Dr. M was surprised by that, too. I just cannot believe it. I have weakness in my legs, pain down my buttocks, hips and legs, pain/weakness in lower back, spasms...

I've had a brain MRI. Showed subtle midline cerebellar atrophy. No one's looked any further for a cause. Neither of the 2 MRI's were with contrast.

Each flare brings on more 'damage' that doesn't ever return fully to normal after the flare. This time it's numbness/tingling in my right hand - besides all the other normal flare stuff.

I just feel defeated.

But, I can't even feel that without people thinking I need to go see a psychiatrist. Why can't I just feel defeated without people calling it depression? Why can't I experience NORMAL human emotions without having that damn label attached to it???

And somehow, through all of this - when I'm getting worse by the day - I'm still supposed to do all the things a mom is supposed to do. I'm still supposed to be able to do everything. I can't. I give. I'm done.

 

[SRL]

Was your MRI done with one of the newer, higher power machines? There's a huge difference between images between those and the older models.

Have you been tested for Lyme Disease?

 

[flutterbee]

I think so. The MRI took 10-15 minutes as opposed to what would have been 45 minutes on the old machines.

And yes, tested for Lyme. Negative.

 

[Ilovemyson]

Hugs and prayers.

 

[flutterbee]

by the way, I do feel like I'm back in my body. Everything does not seem surreal anymore. So at least there's that. Right?

 

[gcvmom]

FWIW Heather, I'm not attached to my body either.

Anyone wanna trade?

(Tip-toe to the corner, ​

by the corner, that is where I'll be​

Come tip-toe through the tulips with me...)​

​

 

[flutterbee]

Very funny, Gcvmom. Brat.

I would like to have MY body back. I had a good body. Kept up with all the demands of life and social activities. It always had lots of energy and it looked pretty darn good, too, if I should say so myself. I don't want this foreign thing attached to me now. It isn't mine and it certainly doesn't look like me in the mirror. I'm still always surprised by the reflection that stares back at me.

I put on the brave face and a friendly smile and go out into the world and no one would ever know that I'm dying a little on the inside with each change that takes place.