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. What's this stuff like?
Sandie
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