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*

[Momzilla]

Oh, no!  That's exactly what my husband is expecting....

I would like to know exactly what the endo thinks will happen.  He says he got kissed in the mall  --mauled in the mall?-- by a patient who was so grateful to him for restoring her good health.  She'd never felt better.  I'm going in with a good attitude, or trying.  But I've been 22.  43's better, I think.

I feel like I have the flu all the time, so do you think I'll notice?  Just kidding...I'm just so exhausted again.  They (the out-of-state pharmacy) called today to get my verbal consent to contact my insurance company.  I never heard back from my endo.

Zilla*

[monotreme]

Zil, when I was taking Growth Hormone, it made me feel like I had the flu for a few days, then that flu like feeling went away.  My endo said the GH would make me feel energized, younger, and lose fat and gain muscle mass.  

Sorry to say it did none of that.  The only thing my wife complains about is when my testosterone gets back over 500 and I "act like I am 25 again".  She will jokingly tell me that she is not 25 anymore and why don't I cut back on the shots to every other day.  She is referring to the Human Chorionic Gonadotropin shots for testosterone replacement.  

So I am not sure you should expect any miracles from the GH.  

Good Luck today.
Craig

[Momzilla]

My poor hubby followed me around like a puppy dog all day.  If I had the surge of GH, as in, if not--the dog house.  I ended up going shopping for 'Steaksgiving' with my mother for groceries and stuff and limping home, exhausted.  Doghouse.  Poor guy.  I never got the surge because I am deficient, says the endo.  My endo promised to give my husband a 22-yr.old wife with the injections.  I asked him what he will promise me?

Will let you know how things go today....

Thanks for your reassurance guys!

Zilla*

[Quixotic1]

Well, that just shows you what I know!  I wasn't aware of the hormone/cerebellar connection.  I'll have to read about it.

Any abnormality or change in the brain is a type of lesion.  Especially atrophy, because, what "atrophy" means is that enough nerve cells have died off that the entire section of brain has shrunk.  What do lesions in MS do?  They eventually kill off cells.  I'm not saying that your small cerebellum (which is not a thinking portion of the brain.  It has more to do with orientation and movement in space) is due to MS, but that it indicates a brain lesion.  The biggest and most widespread kind.  During my reading about diagnosis of MS they refer to plaques and other lesions, of which atrophy is the most related to disability.

I'm sorry that looking at the pictures upset you so much. Maybe you just got a small one from the beginning.  Were you at the end of the line when they were handed out?  Maybe you just got the dregs...  That's what happened to me and my eyebrows.  There weren't any good ones left by the time my turn came up.  Either that or I have had progressive eyebrow atrophy since childhood.

To know if your "small" cerebellum is atrophic they would have to compare it to previous images.  Also, you need to know from your neuro exactly what "cerebellar" signs you have on exam.  Also ask him if it looks thin and "lacey."

BTW - I never heard the report on whether you were "all over" your husband after that test you had.  Did you have the reaction the endo predictied?  Did you really feel remarkably better?  When do you begin GH therapy?

Quix

[monotreme]

Well, Quix, good to hear from you.  yes, Zil and I are hung up on pituitary size tonight.  So glad to hear your sense of humor again.

Ok Zil, let me know what your docs say tomorrow.  My whole brain has shrunken away from the "wall" or place  it is supposed to be in.

Craig

[Momzilla]

Thanks for checking Craig!  I almost think this place cranks out MRIs for my endo to say what he wants.  He did want to know what the report said, just to make sure I didn't have a "microscopic tumor."  But I saw the report said my gland was 'small.'  Weird.  You beat me!  And thanks for all your support.

I hope I'm not sterring you guys wrong about the 'atrophy.'  My doc never said 'atrophy.'  He said small.  And he looked serious.  But when I looked at the images at home, it looked like the images of atrophy.  My cerebellum does not fill out the whole space that it used to, or is supposed to, and it looks 'lacy.'  I don't know how else to say it.  It looks 'pulled away' from the 'sac' it's supposed to be held in.  The perimeter.  There is space around the lacy cerebellum and the rest of my 'top' part of my brain.  Do you see what I'm trying to explain?

I hope I haven't mistated it.

[Momzilla]

I'm SO glad to hear from you.  Although Craig has been messaging me and doing a great job of it in your absence!  We two have been so worried about you...

I'm blown away.  Does this mean that my shrinking cerebellum is a sign of a lesion?  I guess you need to say it again!  My little  teeny brain can't understand.  I'll be talking to my endo tomorrow.  And I see my WMA Neuro next week.  I want tests.  I want answers.  Dagnabbit.  I'd be excited if my poor brain was bigger.  I swear, it was so pitiful, Quix, I could cry.  Do you think the degeneration can be stopped?

I did look on the NINDs site, and it said that Cerebellar Degeneration CAN be caused by endocrine disorders caused by pituitary and (another gland) dysfunction.  But it was further down on the page underneath a list of more common causes like MS or congenital ataxias.  I'm confused, but I have to rule out MS.  

Yep, I'm a shortie.  5' 2 and a half" with my shoes off.  But I FEEL taller.  I FEEL 5'4".  (Just not tonight...)

Zilla*

[Quixotic1]

Oy!!!  Don't you guys know that we don't CARE about the size of your organ???

One of the most common areas of MS lesions is the cerebellum, and cerebellar atrophy is well associated with advanced MS.  The symptoms are the "ataxic" wide-spaced gait and difficulties with fine motor skills.  Problems with past-pointing and rapidly alternating hand movements.  I cannot see the connection between pituitary problems and cerebellar atrophy.

Atrophy is considered a "lesion" on the MRI.  Let me repeat that "Atrophy is considered a "lesion" on the MRI."  A lesion is an abnormality in the normal structure.  Atrophy was Lynn's first visible "lesion."

I did a little searching on the normal range of the pituitary gland in adults.  It was hard to find.  Females have larger organs (neener neener!).  It is measured by it's height and not it's width, becasue the width is limited by the bony sella (the bowl it sits in).  It also changes size in women along with their menstrual cycles.  The average 20 year old woman would have a pit about 9mm.  It then progressively shrinks to as little as 6mm in the elderly woman.  Remember that is average!!  Also the pituitary height is directly proportional to a person's overall height.  A shorter woman will have a smaller, (shorter) pituitary gland.

It's not clear, 'Zilla, that 6mm is all that small.  Aren't you short or are you an Amazon?  I can never remember.

Quix

[monotreme]

Zil, my curiousity couldn't take it anymore.  I looked up sizes of pituitary gland.  Seems like for men it is anywhere from 4 to 9mm but some places said it should not exceed 7.7 mm.

For women, many places said it varies with pregnancy, being post partum, and age.  it can be anywhere from 3mm to 9mm, but  the 9mm was for post partum women.  it shrinks after the post partum phase.

No where did it say that the size affects the function.

Craig

[monotreme]

Zil, this is getting amazing.  if you have a small pituitary, mine is smaller!!!  I just got out one of my many brain MRI's and my pituitary is 5mm.   It is funny that the super docs as they are called...the neuro-endocrinologists at UCLA and  Seattle never commented on the size.  In fact the one at UCLA who told me to not go on growth hormone again because my IGF-1 is now ok, didn't even consider the size of the gland.  I really do wonder though of the connection between pituitary disease and MS.

Craig

[Momzilla]

Hey~

We have a friend who's a physical therapist, and he's given me some things to do.  I'm really not nearly so weak as I was last summer.  I couldn't place my legs on either knee then, either.  Not only couldn't I lift my legs, my bottom leg couldn't take the weight of my other leg resting on it.  I'm sorry you're so weak.  Prayers back.

I haven't seen the report, but I think I'll ask for it.  I only know what my doc told me.  I saw my pit was 6 mm.  I don't know how big they're supposed to be.  I don't know what the report said about my cerebellum.  Only that my doc blurted out that it was small.  Then I did the comparison shopping online....

I will ask for some kind of testing to rule out MS.  I guess evoked potentials would make sense, and an LP for MS protocol.  It's what my psychiatrist has wanted all along.  From the start.  He thought the first neuro was negligent not to have done all that.  

I just remembered -- I have a back-up plan!  I have an appointment in January with an MS specialist!  He treats mostly MS patients.  I made the app't long ago.  Just in case Dr. Wonderful didn't work out.  I guess I'll hang on to that appointment!

If my endo and neuro don't do the tests I ask for, I'm sure someone with a fresh look will, don't you think?

Makes me feel relieved to have remembered that.  

Hang in there, too, Craig.  When do you see Morrow?

Z*

[monotreme]

Hang in there Zil, we are all here for you.  On the MRI report it usually says what Tesla the machine was.  If it does not, call the place you had the MRI at and ask them if it is a 1.5 or a 3 Tesla.  the MRI technicians know.  I have had to do that once when it was not on a report, but every other report I have has the Tesla on it.  usually in the first paragraph of the report.  

Maybe you could ask for evoked potentials?  
Prayers are on the way for you.
I can only walk about 50 yards and can no longer lift my right leg onto my left knee or my left leg onto my right knee, I do have some exercises the physical therapist gave me at NIH.  Do you want to know what they are??  I know you are stronger than me, but I can give them to you if you want them.

Craig

[Momzilla]

Oops.  Trouble with my keyboard.  In there somewhere I meant "stop the degeneration" of my cerebellum*

[Momzilla]

Yes, weakness is my everyday pal.  It's not terrible like it was last spring/summer, but my endo observes it still.  I, too, still have to pull myself up with the banister to go upstairs any time of the day at home, and at night, I DRAG myself, sometimes crawl up the stairs like a four-legged creature.

I have to keep my eyes open when we pray at church, otherwise, I know I'll topple.  I have a wide based gait, which I see is a symptom.  I'm sick....

I'm not sure if this last MRI was done on a 1.5T or 3T or what kind of magnification.  All I know is I'm scared.  I want to stogeneration of my cerebellum.  I know in my private message I said it wasn't too bad, Craig, but that was just on my memory.  I looked at the cd with my husband, and I was sick to my stomach.  My cerebellum is pitiful.  As bad as some examples of poor degeneration online.  People with congenital ataxia.  

We have a new nurse at work and I know she's dying to ask me what's wrong with me.  I'm not supposed to talk about my health at work.  Wicked boss.  And now I can't even talk to the surgeon I work for.  We used to be very good friends....His wife ruined it.  My endo should call me tomorrow, tho, so I will ask him more questions and I will insist we rule out MS.  We must.  I can't let more time go by.  I know he'll understand.

Thanks for writing.

Zil*

[monotreme]

unfortunately, the lesions count does seem key these days.  have you ever had a MRI of the spine to check for lesions?  And I remember, I had leg weakness going up steps back in 2003 in law school but just compensted for it by grabbing on the banister and puling myself up.  I basically ignored it till it got very bad in 2004.  But I had no lesions till 2007.   At least none that they could see, as Quix would probably say.

I wish the doctors could figure out another way to diagnose MS before people were bad enough to have lesions...

craig

[Momzilla]

Thanks for the message, but I don't have any LESIONS.  Isn't that key?

I have just about everything else....

On frustrated gal*

[monotreme]

Hi Zil,  question---do you get dizzy when you stand, feet together, and close your eyes??  If you do, that is the Romberg sign and it means cerebellar involvement , or disease.  it usually happens with MS.  I have posted previously that I immediately fall down with extreme dizziness (found out the hard way at CCF).  That would be one way to see if there is cerebellar dysfunction.

And concerning the above previously posted question about heavy breathing, I also get heavy breathing with exertion, like going up stairs or rushing to go to work.  I don't notice much, since I am in denial about my disease so much of the time in order to prevent a mental breakdown, but my wife comments on it  and tells me to sit down and rest for a few minutes till my breathing normalizes.

Craig

[essdipity]

As you are wont to say, OY! Please fill us in with what's going on with you.

ess

[Momzilla]

Dropped my cd off at the endo yesterday.  He looked at it immediately with me.  His first words were, "The cerebellum is SMALL."  Apparently it's not SUPPOSED to look like a lacy little flower, but a big, full cauliflower.  I asked him the significance, but he didn't answer.  Just kept flipping through images.  He didn't look ahppy.  My pituitary is on the small side, too.  Everything else looked great.

I went home and looked at images of 'cerebellar atrophy' online.  Mine doesn't look too great.  I'll ask him abput it at my next actual appointment.

Zilla*

[yorkieville]

T, we need to turn you blue! :)

I agree, Dr. K IS awesome! No, I did not know she is moving her practice. Where is she moving? She didn't mention that when we spoke on the phone, Thursday afternoon.

Oh, I would love to take some of my Prednizone withdrawal out on that witch of a tech! I am glad you mailed pictures to her superior.

I hope I get answers with the next tests. After that, even Dr. K said she doesn't know what else to test.

Hugs,
Sheila

[T-lynn]

Hey your in blue and I'm not yet,thats a good color for you.

DR. K is awesome,did you know she's moving her practice,I got a letter in the mail today,you should be receiving one.

Get  my results monday and the tech was a brutual witch,she was not patient at all and I told her I had hearing loss and doble vision with INO in the left eye.She bruised my forehead by repasting that electrode to my forehead.Now its scabbed over.I took a picture of it and emailed it to her superior.
She done the left eye 6 times.

You will get answers soon.

Hugs

T

[yorkieville]

Ok, I am checking to see if I have turned 'blue'.

[Momzilla]

I'm going to send you a message, to try to help, but go to "MyMedHelp" up in the righ corner.  It should instruct you as to how to create a Profile.  Look for my message in your "Inbox."

Good luck.  If all else fails, ask a 4 yr. old neighborhood child to come over and do it for you!  They seem to know much more than we do, don't they?

Feel well today!

Zilla*

[yorkieville]

Zilla,

   How do I put my name in blue?

   Sheila