Neuro visit today

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Date Joined Oct 2007
Total Posts : 343
   Posted 5/23/2008 5:04 PM (GMT -6)   
Saw my neuro today and he's frustrated by no lesions on any of my MRI's.  However, that did not rule out his dx of MS. He said long before MRI's MS was dx'd with the groups of symptoms together that can dx it (like I'm exhibiting megafold) and so it stands.
However, he is torn on our path from here because he knows I want to be proactive but thinks conservative might serve me better. He approved the Provigil big time, said it's excellent (smiled that I'd done my week long check it out already! :) ) and is happy I'm trying out the diet and supps (though is cautious because everyone's different so beware). So our next step is a lumbar puncture late next week when he's on call at the hospital. He wants to see if the OBands show up. If they are positive he'll consider the med regimen... otherwise he's in favor of monitoring it on a quarterly basis and working with physical therapy, exercise, diet etc.
I'm not looking forward to the LP but I trust him alot and agreed I prefer the conservative approach at this point. He said if he was going to recommend a med, it'd be Copaxone but let's get that far first.
So there I stand. We shall see now.  
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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Date Joined Jun 2005
Total Posts : 2135
   Posted 5/23/2008 7:11 PM (GMT -6)   
Good luck with your spinal tap (lumbar puncture). While you'll find many "horror stories" around about it...I've had 3, with NO complications other than a bit of a sore back the next day. Just follow his advice about what to do prior to it (some doctors recommend you consume lots of fluids, particularly fluids with caffeine, and then lie FLAT for several hours after the procedure), and I hope you'll be fine.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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Date Joined Jan 2007
Total Posts : 3571
   Posted 5/23/2008 7:43 PM (GMT -6)   

I am so glad you work so well with your neuro.  That is more than half the battle, finding a doctor you trust.  The lumbar puncture is not great fun but you will do just fine and it can tell a lot.  It is a very useful tool in ruling in and ruling out other stuff that mimics MS.  Those o-bands were there for me but they are not there for everyone.  Just remember what your doctor said, that this is a hard disease to diagnose.

love and prayers,

Gretchen       co-moderator MS board       diagnosed with MS July 2006

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Date Joined Mar 2006
Total Posts : 2146
   Posted 5/23/2008 8:24 PM (GMT -6)   
Hey Deb!
Good that u'r doc is taking the conservative road and not just running full steam ahead. Sounds like a good doc! The Lumbar Puncture was pretty much a breeze for me. I did have a sore back and the headache kinda quickly, but it was ok as long as i did what i was told! Laid flat and drank coke...something i enjoyed doing! It should be just fine friend.
(ooops! I'm sorry DEB!!!)

Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is*

Post Edited (rhondab) : 5/23/2008 8:21:33 PM (GMT-6)

Regular Member

Date Joined Oct 2007
Total Posts : 343
   Posted 5/23/2008 8:31 PM (GMT -6)   
Thanks Uppity and Gretchen! 
For sure on his advice and you know Uppity he's already told me just that, said it's really easy! Got my sis arranged to drive me to and fro... should be fine. I coagulate fine, my labs were all great for him today (my GP and him work well together).
And working with him is very unique... he's got a rep for being a little "odd"... I guess he could be compared to a "House" like character without the sarcastic caustic nature, he picks things up most other neuro's miss... like virus's in nerves causing winged scapula in my hubby last spring! He's just amazing... observes, does all his tests in such a way you cannot fake a reaction if you're a hypochondriac, and he's got a great sense of humor to keep you smiling thru alot of fear... I'll tell another story  in another post sometime.
So yeah, we work great together, I really like him. I'm horribly stubborn with his staff about being ONLY with him, no subbing me to one of his underlings... :) he's always got fellows studying under him... but when he gives a dx, he's right on target. Highly credentialed but doesn't toot his horn a bit about it, and always always learning everything he can about everything!
Hey Rhonda! Yeah, I'm liking the conservative approach myself... I was ready to argue but he really laid it out square before I could say "but..." :) He's always got the whole pic in mind. I did flunk my walk test today though, says I'd most likely have a hard time convincing a cop I'm not drunk! I laughed and said, Yep, I figure that too! :)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

Regular Member

Date Joined Feb 2008
Total Posts : 69
   Posted 5/24/2008 8:06 AM (GMT -6)   

Well, Deb I've been out of the loop for a while, and came back to check on you.I'm confused.Nothing on your MRI.Hey?Well I can sort of relate,when my son had every symtom of a leision in the brain stem area that effected him dizziness, vertigo episodes,hearing changes, they said these symtoms come from the lower part of the brain,but found no leision there, He suffered about 1-1/2 years..and then it stopped.8- months later a leision popped up there.I know his doctor said they are working on theories,regarding this kind of situation.I don't want you to have any leision thats for sure.I would hope you to get a dx, though, for peace of mind.

Just remember,that God has a plan, and in my life,the light switch has been turned to on.My son is doing so well since the very first pill of Neurontin.Hes on the highest dose now, and doing extremely well and has gone back to his life.Still has the eye jitter thing , but less severe, and has given up his cane,and walks with strength now.MRI is stable.

Anyways, how can the very first pill he took bring light to his body? We saw his movement disorder nero 2 days after he started that med, he said no way, it doesn't work that fast, its placebo effect..5-weeks later, hes a person I have not seen in 2- years.You know his faith is very strong, and before he started this med. I asked him one what are you going to do today?  His said....I will sit here and wait to receive Gods blessings.I said..and you will receive, and he has.I must thank you all, that have prayed for us,the journey is not over,but we are standing strong..Love to all and God Bless.

its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 

Regular Member

Date Joined Oct 2007
Total Posts : 343
   Posted 5/24/2008 9:53 PM (GMT -6)   
Hey Rhonda, that's ok! I knew you knew what you meant! :) Isn't that half the fun of knowing we're ok... we just don't always get it out right? :)
Hey Deb! So good to see you! Really pleased to hear your son's doing well with the neurontin! That's wonderful!  And to see him returning to himself, it's great to hear it's progressing so well.
I love my neuro's explanations. He's a firm believer in symptoms over tests really. He uses tests for guidelines... he conducts his own tests, always runs thru all the baseline stuff with me, and he'll keep tracking the MRI's etc... but he believes in symptoms. He's logged the right eyes permanent condition now (being dimmer, less responsive and receptive).  He believes me when I hand him my journal of symptoms... this visit presented 3 new ones: spasticity, "listing" while walking, and the kidney/bladder issues. He has set the dx as definitely MS. We'll do the LP and go from there to decide on meds or not.
I've also become very aggressive with a strong supplement regimen, and starting to exercise daily now.  Maybe it's more helpful than I realize. We'll see. So I'm good with where we stand. As he put it, the disease is so individualistic and wicked, it's very hard to generalize it. Every single person is different. He says mine may be what they term "benign"... annoyingly there but not progressing rapidly into debilitation. I'm really ok with that.
As you pointed out, God will get me thru it all like He gets us thru it all every day.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

Motown John
Regular Member

Date Joined Jun 2005
Total Posts : 475
   Posted 5/25/2008 1:09 PM (GMT -6)   
Sunday p.m.
Hello D'awesome:
I had a spinal tap @ 15 years ago....and I was in hospital for something else MS related.
A resident performed tap at @7:30 p.m., and I went to sleep a couple of hours later.  No problems.
The only problems I have heard is when people get out of bed shortly after procedure.
Stay in bed for a couple of hours. 
All the very best.  John
DX'ed June 21st, 1987

Regular Member

Date Joined Oct 2007
Total Posts : 343
   Posted 5/25/2008 1:30 PM (GMT -6)   
Hey John,
yeah, I had one for the bout with viral meningitis (which the neuro has now confirmed was an acute viral meningitis case) in 2002, but they moved me right away and combined with the menigitis issues... I was pretty miserable after that one. My neuro assures me he will  be very good to me and also says stay still the first hour, go home, go to bed for the next 3-4 hrs and drink lots of fluids... figure it'll be all good.
It's always better when ya trust the doc who's doing you too, though the ER doc was great, I've got far more trust and confidence in my neuro. :)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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