Craig -- You OK?

[Momzilla]

Hey, Craig~

Haven't heard much from you.  I know you're going through a really frustrating time right now.  It's been one disappointment after another.  I'm concerned about your mental health, to be honest.  I would understand if you wanted to take a break from the forum for a bit, but I would really like to hear how you're doing.

Are you all right?  I know it feels like you're running out of options.  I'm sure this is not the case.  Everything IS going to be all right.  You've got a feisty wife, for one thing.  We do need to get you a new primary care doc.  But other than that, it may take a little doing, but there IS a doctor out there who will know how to diagnose you.  I am sure of that.

Take care and drop a note.  OK?

Zilla*

[monotreme]

I keep entering the "enter" key by mistake!!   Anyway, with the painful electric shocks and the pain on the sole fo my foot along with my usual muscle spasms, I really lost hope today.  And my fatigue was so bad today.  And the Provigil makes me get crawly feelings up and down my spine.  So I am trying the alpha lipoic acid and acetyl L carnitine that you posted.  just did not take it today with all the pain I had.

Thank you Quix.  I am hoping that Dr. Morrow won't dismiss me because I am on the East Coast.  We wrote in the note that I have traveled to OHSU in Portland so flying to the West Coast is not a problem.

thanks for everything Quix.  Your help and support means so much to this scientist / lawyer who used to think the world makes sense.  Unfortunately, I am coming to my senses and finding out that it doesn't always make sense.......Craig

[monotreme]

Quix, I have had electric shocks in my legs today for the first time and it was very painful.  On the bottom of my left foot (my worse side and I am left handed) it feels like I am walking on broken glass.  So I did not get the fed ex out today but it is written (my wife did it for me) and I will put it in the fed ex tomorrow on the way to Bethesda.  I will be overnighting it and Dr. Morrow will get it on Tuesday.  

When I spoke to the NIH neuro this past week, I told him about my leg spasms, painful sensations on the bottom of my feet and numbness of my left leg.  i asked him if that fits in with NPH.  He said well the feeling of extreme heaviness of my legs fits in, but not really the nerve sensations.  

He said that I have 'alot of brain issues" and maybe that is what is causing the nerve problems.  I am willing to go through this LP even if I can't hear back from Dr. Morrow till it is over.  I figure it will give me one more data point to discuss with him.  His office scheduler said he is booking into January for new patients.  Wow, he sure is busy as you said.

I am really discouraged Quix.  For the last year as I have watched myself decline I always had hope that  I would get help.  After all, how can someone in the U.S. lose leg function and mobility and the doctors do nothing??  But that is what has happened.  

[Quixotic1]

CSF in the normal person constantly is made, flows around the spinal cord and brain and is reabsorbed at another site.  If there is an obstruction to the flow between the point where it is made and the point where it is reabsorbed, then there is no feedback to tell it to shut off.  The body keeps making it and it builds up, increases pressure and causes the condition known as hydro(water)cephalus(on the brain).  I don't understand the concept of normal pressure hydrocephalus, but apparently too much is made and instead of increasing pressure the brain just recedes.  The brain is the ultimate loser here.

Any you lose from a spinal tap (20cc or so) from a leak, during surgery or whatever, will be replenished in due time - 24 hours or so.

If the procedure restores some function to Craig's legs, then they have made the diagnosis through a "therapeutic trial" - they tried the therapy and it was successful.  If that is found to be the case, the solution is to put a shunt (tubing with a one way valve with a specific pressure point) in the lumbar area (apparently from what Craig has said) and allow the excess fluid to drain into another part of the body.  In many ways it would be a curative treatment.  Much preferable to the degeneration of MS.

Craig - did you FedEx the stuff to Portland?  How are you doing?

Quix

[Momzilla]

It was my husband who said those famous words Q quoted.  Just in case you were all wondering!  Craig, I'm going to have to be brief, too, unfortunately.  My computer keeps closing down, and although I read your response yesterday, I was unable to post.  

Keep on trucking.  I do wonder, though...Does CSF replenish itself?  In other words, it can't be gone once it's drained, right?  I know you don't want to go down this path, necessarily, but maybe it's worth a shot if the fluid will replenish (not with a shunt, of course!), and see if it helps at all.

I have you pegged for MS, but maybe the docs at NIH see something we don't.  Oops.g you all again!

Byr,
Z

[grannyhotwheels]

I'm with you.  I would be scared out of my wits.  Remember that we are here for you and we will pray constantly for your health and for the doctors hands.

I'll be praying,
Carol

[Quixotic1]

I have to be brief.  The fluid is there becasue there is space.  If fluid is drained the body will make more over the next day or so.  For instance:  They used to do a lobotomy for mental illness.  Theat left a huge space and the body filled that space with CSF.  

Who was it that said, "I would rather have a bottle in front of me than
                                 a frontal lobotomy."

Hmm....Does Pavlov ring a bell?

Q

[monotreme]

Thanks Roxanne.  I appreciate your good thoughts and wishes.  Have a nice night!!....Craig

[Roxie0818]

HUGSSSSSSSss to you Craig...  I understand you are worried... and scared.  We are here for you
Roxanne

[monotreme]

Hi Zil, thanks so much for your post for me.  Glad you saw my reflexology post because I missed this until I saw your note.  I have been down lately.  But I am most confused because I am going to National Institute of Health on Sunday for the week.   My wife had sent in my records a month ago and the neuro thinks I have alot of abnormalities in the brain, despite what the radiologists  and neurologists at CCF and Philadelphia are calling small vessel disease, "normal" brain atrophy, and "normal" T2 lesion perpendicular  to the ventricles.  

However, three independent NIH neuros think I have Normal Pressure Hydrocephalus, which is fluid on the brain which prevents you from being able to walk, causes memory loss etc.  They want me to have a neuro-opthamology consult, a neuro-psych evaluation (like you!!), and evoked potentials.  

Then the hardest part is they want me to have a lumbar puncture and drain ALOT of fluid since my brain has fluid in the ventricles.   I am scared out of my wits.  They are saying that if draining fluid helps to regain leg function, then they will have a neurosurgeon put in a shunt.    However, I am worried that the fluid is there because of my brain atrophy and if the fluid is drained, what will happen??

The NIH doctors said this is my only chance to walk with out difficulty.  It is the only reversible curable neurological disease.  So they want to give me a chance and see if this is what the problem is.  But I am worried and scared.
Craig

[Momzilla]

Had to bump this back up.  Don't want to lose you....

Z*