We miss you, Yorkieville!

[Momzilla]

Hi, Sheila~

I know you've been having a rough time, and I've just been giving you space.  But I can't take it anymore!  Where ARE you?

Is Dr. K. helping at all?  Are you in that much pain?  I'm worried about you.  You're not seeing other forums behind our backs, are you?  I know you got your diagnosis, and you really should be with the CIPDs, but we need you here, to know you're OK.

Come back!

Love and hugs,

Zilla*

[yorkieville]

Dr. K called me back almost immediately after I put in a call to her. I told her what a horrible visit I had with my Neuro here. She said she was sorry I had to get in the middle of the report being sent to the wrong address. I told her he didn't have to be sop upset, I had brought him a copy. She said she could understand why he didn't understand her reasoning for putting me on Solumedro & Pred. just looking at the EMG. She said she had done it because of the protein in my spinal fluid.

In my humble opinion, if my Neuro here had really cared, he would have picked up the phone and asked her, instead of upsetting me.

Anyway, she said she would like to check out my autonomic nerves. so, I will be returning to Cleveland for some specialized tests. Just waitng to hear from scheduling.

Woke at 4:30 and my back and calves and feet hurt so bad I can barely walk.

T, I am so glad my Neuro referred me to Cleveland. Right now, I think Dr. K is my only hope.

I'm really worried about you. It's awful when our eyes and ears hurt. When will you get the results of the VEP & BAER?

Zilla, I have tears of joy running down my face as I read your post!  Not a bit jealous. Just so happy for you! It's fixable!!!! Yay!!! God IS good.

You made me laugh with your boys telling you that your MRI looked like a fat old man. LOL

We love you, too, and your joy is our joy.

Hugs,
Sheila

P.s. I am going to turn my name blue as soon as I get up again. Going back to bed, 'cause KIa is starting to cry, and if I don't go now it will turn into a screech.

[Momzilla]

T~

You break my heart.  I hope you feel better, T.  When will things calm down for you?  

Love,

Zilla*

[T-lynn]

I'm glad your able to turn your hubby on (lol)

Its good that you know what has occurred and what is occuring and its a blessing it can be fixed.You have a good DR.

I will put my name in blue when I get my head back on straight.

I had a VEP and a BAER done today,it took the technician 6 tries with the left eye and looking at that checkered board screen for that long.She was getting impatient.I warned her I've had double vision in that eye.And for the Baer if she would of shoved them little ear peices down my ears any further I was gonna deck her.She was having a difficult time getting resposes from the left side.

My eyes and ears are killing me tonight.

T

[Momzilla]

I'm NOT the energizer bunny!  On the contrary!  I scared my kids with the heavy breathing, believe me!  Turned my husband on, tho!  But it doesn't take much!  Wink!  We have five kids and he forgets about foreplay, what can I say?  Tee hee!

I am interested in catching up with all of you.  Haven't been on the forum except to return private messages.  T-Lynn and Sheila-- You HAVE to get BLUE names!  I'm telling you now!  I miss corresponding with you that way!  It's nice.

Anyway -- briefly -- I went to the endo yesterday, and then for an MRI of my brain.  No lesions that I could see.  And no pituitary gland that I could see either...

I will go into more detail once I have fully absorbed what the endo told me, but:  I know what I have now.  I am deficient in human growth hormone.  I guess that's my whole problem.  My doc, Dr. H did a study last week and called my hubby when the results came back early.  I am pretty low.  He likes the levels to be between 8-10.  I was .3-.8.  I'm not sure what the units were.  5 can be normal, if I understood correctly.  It can be a problem with the hypothalamus or pituitary.  He thought my problem was with the hypothalamus, but it was clearly with the pituitary.  He showed us somehow on paper.  I don't know how, but it was clear.

He said it can be a benign tumor (I know I don't have one) or idiopathic, or could have been damaged during pregnancy or childbirth (when I was pregnant, not my mother).  The pituitary is very vascular, and could have bled during these events.  Or many different causes.  We might never know why (idiopathic).

So, I looked at the cd of my MRI with contrast.  NO lesions.  It surprised the heck out of me.  I really expected to see the lesions coming out of my ears, waving "Hello!'  I truly did.  But, my brain looks great.   I'm sorry if you're jealous.  I know many of you are suffering so greatly.  I just made myself cry!  I have such an easy, fixable answer.  God has led me to this doctor who knows how to treat me.  He hopes.  If not, he will keep pressing.  He told us.  I'm so very fortunate.  God is SO very good.  I'm sobbing all over myself.

It's funny.  I was showing my boys my MRI.  There was one slide that was particularly beautiful.  Just --LOVELY.  It was a good job by the tech, of a slice of the cerebellum and everything and I looked like a fat MAN!  My profile looked really bizarre!  My were like, "Yeah, Mom.  Beautiful.  You look like a fat old MAN!"  But I showed them that the cerebellum looked like a flower and the brain sort of looked like a sea urchin and stuff, and they came around a little...  They could see how wonderful it is that we can SEE INSIDE the brain and God is an artist kind of thing....  Maybe it's just me!  But the tech got some GREAT pics!

ANYWAY!  I will post soon about my news.  I know it is great news for me and I don't want to diminish anything my dear, dear friends are going through.  I truly LOVE you guys.  You have all been here for me when I have struggled so.  It has meant so much to me.  This has been a difficult time for me.  I don't really share difficult times easily.  I don't like to depend on others, but you all have made it very lovely.

Thank you,

Chris*

[T-lynn]

I am so sorry you are going through this,do you have a copy of the EMG/NCS.If not call and ask for it to be sent to you.

Dr.K had to of seen something on it to put you on the steroids.

What may seem normal to one DR may be veiwed differently by another.

Its a good thing that your blood test came back normal,I'm sure she checked for muscle diseases and if they are normal then thats a blessing.

Hopefully the ultram will give you some releif.

Have they done any evoked potentials,especially the samotosensory?

T

[yorkieville]

The above post was to both of you, too. Guess I tried to type too many letters in the 'To:' space.