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MY DOC SAID THAT I CAN'T BE HAVING THESE SX BECAUSE I HAVE NO SPIN...
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MY DOC SAID THAT I CAN'T BE HAVING THESE SX BECAUSE I HAVE NO SPINAL LESIONS!

Hey Guys,
So my neuro last Frid had dx me with PTC(IIH), and when I asked about all these other sx regarding the rest of my body, he said.....Well you don't have any other lesions on your spine so they can't be causes any sx.  Then he said ....Look you have this that and the other, the tests results don't lie, you can fake this... But, you do not have any other lesions.  He didnt do a cervical mri though, so I dont know what he is basing this on.  I said... Well what about my buzzing vibrating head, amongst other parts of my body, all on the left side, and  all the muscle spasms, in these specific areas that I am getting, and he said ...Sandie, your're an enigma....

Guys, is there a MS Society website, one that neuro's would trust the info from, that talks about these lesions that are too small to show up on the mri's, that I could show him?  I am going to make him address these other sx.
You know, when these sx started, the vertigo, ON, bad cog, memory, stuttering, Hug, etc,  they all started one after another, it was really wierd. I told my husband, it was like I was having some kind of flare or something.  Then after fews weeks or so, they started to calm down, but never really left.

I need him to explain why I am getting all of this out of the blue.  Even the bladder problems started around the same time, and now I have the neurogenic bladder etc.  It's too much of a cooincidence.  Does this other problem with the spinal fluid cause these other sx?

He prescribed Topomax (topamax).  What's this stuff like?


Sandie
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147426_tn?1317269232
This neuro is a dodo.  He worships the MRI and can't fathom that a point of damage might not be visualized.  This shows him to be a concrete thinker.

When there were only 1.0T MRIs docs said the same thing, but then 1.5T machines appeared and it was shown that those showed many more lesions than the earlier ones.  So that proved that some lesions were "invisible" on the 1.0T machines.

Then 3T came out and the back to back comparisons showed that, using the same software, the 3T revealed 25% more lesions than did the 1.5T.  Okay, clearly those additional 25% of lesions were "invisible" on the lower resolution machines.

We now have a few studies comparing the 7T machines against the 3T (mostly done on cadaver brains).  Again, the higher res machine picks up more lesions than the 3T.  Okay, so on the highest machines we currently have some lesions are still invisible.

Hmmm.....does there seem to be a trend here?  As the magnet and software gets stronger and better more lesions are revealed.  We have not yet hit the point where better machines fail to pick up more lesions.  Therefore, some lesions remain invisible to our testing.

Besides that, it takes an idiot or a very jaded doctor to say that you can't have these symptoms because you have no visible spinal cord lesions on imaging.  He is saying one of two things.  Either he is dumb enough to believe the MRI - ANY MRI - to be all revealing, which it obviously is NOT OR he is accusing you of faking or having some kind of bizarre conversion reaction.

I have told this story a thousand times.  I had a normal spinal cord MRI on a 1.5T and one month later I had six old lesions show up on a 3T.  All six were "invisible" on the 1.5T.  Period.

You need a seocnd opinion, for sure, not only because the treatment for IIH can be very invasive.

Quix
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9 Comments Post a Comment
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1221035_tn?1301004108
Can you ask for a cervical MRI?

What about second opinion?

What was your opening pressure on LP?

Here is a website about IIH...check out all the tabs for various symptoms, etc.

http://www.ihrfoundation.org/

I would be getting a second opinion either way if I were you.

God Bless
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Avatar_f_tn
Hi Daisy

Yeah I'm gonna ask for a cervical MRI.  
A normal pressure is supposed to be between 135 and 190, high end would be 210, mine was 278.
I did ask about the sx, and I do have all the sx, except I don't get alot of nausea, and no vomiting.  But I do get the ear noises, the whooshing sound and ringing, head pressure, head aches etc.
I think I may be getting a second opinion depending how all this goes down when I see him again.

Thanks alot Daisy. Big HUG to you!
Sandie
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1221035_tn?1301004108
sandie
I thought you might like to read this article. It is MS and IIH together.

http://content.lib.utah.edu/cdm4/item_viewer.php?CISOROOT=/jno&CISOPTR=81&CISOBOX=1&REC=9

I have a lot of information on IIH....in fact, I thought that was what I had, and I am still am not 100% sure. My OP was 180....but after that my constant daily headache was gone for about 10 days....other than the spinal headache I had for a few days right after...but it was a different kind of headache. He did have difficulty with the tap...four trys, so I don't know if that could have mess up the opening reading pressure.

I never thought of MS....so I was real shocked when I got a Dx just a little over a month after my first neuro visit.

Hope you have a restful evening.
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147426_tn?1317269232
This neuro is a dodo.  He worships the MRI and can't fathom that a point of damage might not be visualized.  This shows him to be a concrete thinker.

When there were only 1.0T MRIs docs said the same thing, but then 1.5T machines appeared and it was shown that those showed many more lesions than the earlier ones.  So that proved that some lesions were "invisible" on the 1.0T machines.

Then 3T came out and the back to back comparisons showed that, using the same software, the 3T revealed 25% more lesions than did the 1.5T.  Okay, clearly those additional 25% of lesions were "invisible" on the lower resolution machines.

We now have a few studies comparing the 7T machines against the 3T (mostly done on cadaver brains).  Again, the higher res machine picks up more lesions than the 3T.  Okay, so on the highest machines we currently have some lesions are still invisible.

Hmmm.....does there seem to be a trend here?  As the magnet and software gets stronger and better more lesions are revealed.  We have not yet hit the point where better machines fail to pick up more lesions.  Therefore, some lesions remain invisible to our testing.

Besides that, it takes an idiot or a very jaded doctor to say that you can't have these symptoms because you have no visible spinal cord lesions on imaging.  He is saying one of two things.  Either he is dumb enough to believe the MRI - ANY MRI - to be all revealing, which it obviously is NOT OR he is accusing you of faking or having some kind of bizarre conversion reaction.

I have told this story a thousand times.  I had a normal spinal cord MRI on a 1.5T and one month later I had six old lesions show up on a 3T.  All six were "invisible" on the 1.5T.  Period.

You need a seocnd opinion, for sure, not only because the treatment for IIH can be very invasive.

Quix
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738075_tn?1330579444
Do I smell a weenie roast coming tomorrow evening?  I can contribute wood for the coals...
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147426_tn?1317269232
Yep!

Yummm....


Q
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293157_tn?1285877039
I certainly would ask to have a Cspine MRI and full spine MRI.. are you getting copies from the radiologist...the CD and reports for you to look at and keep for your records?

a second opinion as well... just to be sure OK

let us know how things go..
take care
wobbly
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Avatar_m_tn
weenie roast? i would give an opinion but i think i suffer from a form of ptsd dealing with such doctors for so many years. i can't be objective to even help anyone anyomre.

got flame thrower? ;-)
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Avatar_f_tn
Sorry it took so long for me to respond, but I lost my power and didn't have a computer until just a little while ago.

Thanks soooo much for responding.  The machine strength he used is the 3T.  So I'm just really confused, cause the doctors I see seem to tell me one thing and then when I say something about what they said he'll say...Well no, look here's the report, this is what it says.  Like the Urologist told me that my bladder issues were neurologic, and I said that to the Doc,  he said it's an over active bladder.  Now, does that still mean neurologic problem even if it's over active.

It almost like he's constantly steering me away from any kind of neurological dx, that might point to MS.  So you can have both IIH AND  MS?   What about the Topomax (topamax) he's putting me on, anyone here ever take it?   This guy was my 5th opinion.

Thanks  Guys, and thanks Quix for all that info, again came to my rescue!
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