Don't call unless you go numb from the waist down!!!!

Yes, that is what my neurologist told me today. ( My next appointment is in 3 months.)  I guess going numb on one side is really no big deal to him(left face, arm, leg and now inside throat).  I could ALMOST understand if the MS specialist thought I had MS....but since he thought I only had a small chance of having MS and what was going on  was vascular--- it makes the numbness/paresthesias a little more worrisome.  I really think my neuro thinks I  am getting MS--he thought both my reflexes were hyper, left  more than right.  Maybe he was pissed off that I went to a MS specialist??  

He is going to have me tested for CAUDASIL sp? which is vascular...but how many  people have that??  They have to come to your house and collect the blood???  Anyone else had this done?

Oh well, on to neuro #2 ,I guess.  I got "advance directive" paperwork and will be looking into life insurance in the meantime.  I had such deep numbness a few nights ago that I had to get up and look in the mirror to make sure 1/2 my face wasn't drooping.  In the middle of the night I lost feeling inside my throat (can't feel when I swallow on left side)...so sad, I am 39

I don't want to think what I will be like in 3 months..  I apologize to all of you that are in much worse situations...I just needed to vent.  It feels like I am on the tracks seeing the train coming and my neuro is telling me to sit and wait!  It just goes against my nature to do so.

Stacey

[tanky]

I am SO sorry you're going through this.  It sounds scary and uncomfortable and frustrating.  I am hopeful you will find a neurologist you're comfortable with - just keep looking.  I have not heard of Caudasil.  Did the MS Specialist give you reasons why he/she didn't think you have MS and why its likely vascular?   I agree with you...sitting and waiting is hard to handle, especially when you have unanswered questions and continued health issues.  Good luck finding some answers.  Always feel free to vent!  You'll go crazy if you don't.  

[cz1970]

I have a friend with Caudisil... its an aweful disease that mimics MS to the tee. Only a few neuro's even know to look for it.  The lesions look a tad different I guess but to the untrained eye, they would think its MS.  I hope its MS and not Caudisil because my friend isn't doing well with it at all.  Good luck!

[SOONERMOM]

The specialist said because of the location of the lesions--deep white matter only and because my symptoms have been going on too long and getting worse.  He didn't definitely rule it out, but said it would be an "atypical" case.

Okay, here is the definition:
Definition of CADASIL

CADASIL: Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy. An inherited form of vascular dementia that strikes relatively young adults of both sexes and is characterized by multiple strokes, dementia, migraine-like headaches, and psychiatric disturbances. CADASIL is due to mutation of a gene called NOTCH3 located on chromosome 19. Also called hereditary multi-infarct dementia.

Great, I guess if i get dementia at least I won't really know how bad everything is!!LOL
(including my neurologist)

Thanks for listening,  Stacey

[Momzilla]

Yep, another one bites the dust!  What s it this week?  Not a very good one for the neurology specialty, I guess.

What a Dodo!  The CADASIL seems like a stretch, and a pretty far one.  Have you ever had an infarct show up on your MRIs?  Forgive me if you have!  Do you feel like you've had a TIA before?  A weird migraine aura?  What's his thinking on that?  I get that it's vascular, but you're absolutely right, that if he suspects it IS vascular, he should be more responsive to your symptoms now.  Dodo!

Don't worry about what things are going to be like in the future.  My husband always, Don't worry about what you can't control.....And then he worries like CRAZY!  But he means well and he's right.  We've learned better how to 'give things to God' better, and really let Him take the worry out of our lives.  (I hope that doesn't offend you!)  It is hard to stop worrying.

You are young, and you will find a good doctor.  You just have to kiss a few toads first, or something like that.  I hate to admit this, but I am on Neuro #6.  Ouch!  A couple I left because they weren't treating my son's migraines (we went together) effectively.  But, mostly, because no one would listen to me that I had numbness and tingling in my feet.  I finally ended up not being able to walk!  Now someone's listening!

We will get you to someone good before things get too bad.  Keep on truckin!

Next week is going to be better for our little corner of the world here!  Hang tight!

Hugs,

Zilla*

[mokibear]

I just can't believe that your neuro told you that. What a maroon. I sometimes wonder how these people even graduated. Of course you are going to be concerned if the whole one side of you is numb. My question to him would be what is the difference if you are numb from the waist down or numb on all one side. I think he is numb in the head. What a bone head. Sorry guys like that really irritate me.

Hang in there Stacy, I know it is easy for me to say but Zilla is right and you will find the right neuro. Try not to think the worst. I too agree that Cadasil seems like a stretch.

Hugs
Moki

[young at heart]

I AM SORRY THAT YOU ARE GOING THROUGH THIS WITH YOUR NEURO,WHAT A DORK.

DID YA ASK HIM IF YA WAS NUMB FROM THE WASTE DOWN HOW THE HEY-DEY WAS YA TO GET TO HIS OFFICE.

ITS TIME FOR ME TO GET THE VOO-DOO DOLLS OUT!!!!!!!!!!

CADISIL SEEMS TO BE A STRETCH,BUT BETTER TO BE TESTED THAN HAVE THAT STONE LEFT UNTURNED.

I'D REALLY LIKE TO KICK YOUR NEURO IN THE HEAD(OOPS MUST BE THE STEROIDS--THEY MAKE ME MEAN)

THIS NEURO IS REALLY OFF HIS ROCKER,THE NORM FOR MS IS ONE SIDED,USUALLY NOT BOTH,UNLESS YOU HAVE IDENTICAL LESION ON EACH SIDE OF THE BRAIN OR ONE CENTRALLY IN THE BRAIN STEM.

THIS NEURO IS A ZERO---YOU WILL FIND THA HERO OF A NEURO,THERE ARE GOOD ONES OUT THERE.IT MAY TAKE 3,4 OR 5.

TRY NOT TO STRESS OR WORRY,WHICH IS VERY NORMAL,BUT REMEMBER YOU HAVE ALL OF US TO LEAN ON

T

[SOONERMOM]

Thanks,  you guys always cheer me up!!  (I had thought about looking for a voodoo doll tomorrow-lol)  I think I would have lost it without this forum.  My mom actually had a good point:  
The doctor is trying to distance himself from you because he doesn't know what is wrong with you.
I want to find a doctor who WANTS to figure this out.  If it takes me till #6 I am ok with that!!  
Stacey

[Quixotic1]

It's always good to think of the things people forget.  Do you have a strong family history of young strokes and heart attacks?  It is Autosomal Dominant!!  This means that 50% of the family members (kids) will have the gene and if they have the gene they will have the disease CADISIL.  Has your family dropped like flies in their youth?  If not, he is supposing a new mutation in you (sounds insulting) and, I think they are very rare.  

Can someone find a new ice flow?  The last one we filled with CZ's neuro.  Get out the VooDoo dolls we have another Dodo-Doc!

I'm sorry.  This wasn't the guy who liked you timeline was it?  Just another Nurro-Loser?

Time to revive people's memory of our Greek House for People who's doc have told them or implied they were crackpots.  HYPO GAMMA CHONDRIA.  On Friday we hold a Weinie Roast for defective doctors.  It's a PARTY this week!  

Quix

[young at heart]

YOU HAVE A GREAT ATTITUDE,THAT WILL CARRY YOU THROUGH ALL THIS.

YOUR MOM HAS A GREAT POINT,DRS ARE ONLY HUMAN BUT SOME SEEM THINK THAT THEY ARE ABOVE THAT LEVEL.HECK I'M ON NEURO NUMBER 5.

I LOVE MY MS SPECIALIST IF I CAN UNDERSTAND HIM.

VOO-DOO DOLLS ARE FUN,I'M HOPING MY EGOTISTIC LOCAL NEURO IS FEELING EXACTLY WHERE I HAVE BEEN JABBING HIM.

HE TOLD ME YESTERDAY THAT I HAVE TO LEARN TO LIVE WITH THE RIGHT SIDE WEAKNESS AND THAT I NEED REALITY TO SET IN,THAT MY MS ISN'T GONNA IMPROVE.HE ACTUALLY TOLD ME THAT I NEEDED A WHEEL CHAIR,YEP I TOLD HIM EXACTLY WHERE I'D PARK IT.

I GOT NEWS FOR HIM,IF THERES A WILL THERES A WAY.

YOU HANG IN HERE

T

[SOONERMOM]

This was my regular neuro (aka #1).  The MS specialist is the one that loved the time-line.  #1 just glanced at it and tossed on the counter, no questions or comments.  

Funny you should bring up the family history...the Ms spec. asked about my history and decided I didn't qualify for cadasil.  (only a  couple in  their 50's--- uncle, & great-grandmother)  #1 didn't even ask.  I told #1 that the spec. had suggested susac's syndrome and he said "what's that?"  When I explained it to HIM, he said "oh yeah, I think I have heard of it"  It was a stellar day for #1 I must say!

I am calling to get a copy of all my records from him.  I HAVE to move forward.  

Stacey

[nanhamer]

Stacey:
Where do you live? I am in NYC and I have Susac's Syndrome, which is a rare autoimmune disease sometimes mistaken for MS. Have you had any MRIs done? Any hearing or vision loss? Migraines? Dizziness? Confusion? Spastic gait? You could very well have it. Check out Dr. Susacs website:www.neurohaven.com And change neurologists, that guy is a jerk!
Nancy

[biowham]

Run run run, as fast as you can...or walk slowly or whatever your hemiplegia currently allows...and get away from that neuro. Good grief. For him even to say "don't call" for any specific circumstance is a huge red flag, in my opinion. What a jerk to think that it's OK to tell a patient not to call when something is legitimately worrying them. And it sounds to me like you need some immediate answers.

Everyone else here has already made the points about why, but it is highly unlikely that you'd have CADASIL without having family members with it, too. It's pretty devastating and quite obvious, generally.

E

[biowham]

I have gone crazy. I now remember that you've been there, done that. Sorry! I can't begin to describe how bad my memory is these days. If I hadn't got the MRI images demonstrating that I do, in fact, have a brain in there, I'd think I'd left it somewhere.

E

[grannyhotwheels]

Run as fast as you can.  Even if you do have this strange disease he should still be concerned about you being numb on one side of you body.  Does he have a clue what you might be like if you wait 3 months without getting treatment.  Please go on to the next neuro on your list.  I mean like call and get an appointment on Monday morning.

By the way, have you had a lot of these strokes that goes along with the disease?  I'm not saying no you don't have it but any doctor that is not concerned with the one sided numbness needs to be fired and roasted at the weinie roast on Friday night.

Let us know what you do because weather your doctor is concerned or not I sure am.

I'll be praying,
Carol