Would this be wrong, stupid, or both?

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I know alot of you must be sick of me going on about the long-term memory problems I believe I have, so I won't say MUCH about that specifically here. But I think many of you also know i'm trying to get some neuroimaging (most likely an MRI/fMRI) done to see if anything can be determined about the origins of these deficits. I don't have alot of options though since I can't afford one out-of-pocket and my insurance WILL NOT cover
one for anything like this at least.

That said...i've been trying to get accepted into research studies (having to do with autism, LD's, memory disorders, etc....) which include an MRI. First i'd need to meet the eligibility criteria for one of these studies and that's usually very strict of course. The fact that i've never been formally Dx-ed with an ASD doesn't help me much (only NVLD which was officially Dx-ed as LD-NOS or Mathematics Disorder) either. There is one study at the University of Pittsburgh I may be eligible for, but i'm still awaiting the 30-minute phone interview which should determine that. They are calling me next Tuesday afternoon.

Even if I do get accepted into this study or any others....i'm pretty sure that in order for an MRI to tell me anything at all about my memory problems, the technicians would have to actually target the MRI in areas associated with memory (like the Hippocampus for one example.) In other words, they would have to actually be looking for potential origins of a memory problem.


I'm not sure if i'm correct here....but I think this is pretty much the way it works in non-technical terms. I know very little about MRI's aside from the fact that they stimulate water molecules in the brain and cause them to emit electromagnetic waves which allow us to see various images of it. Anyway....the autism study at the University of Pittsburgh includes an fMRI in two seperate research projects for adults with autism.


One uses the fMRI to study how the brain (neurotypical controls also participate in this one) processes emotions. The other project involving an fMRI studies brain structure and function in autistic participants while they read short stories and look at pictures.


BTW.......THEY told me I still may be a likely candidate for participation in the WITH autism group (as opposed to the control group since only a brain-based research project at the University of Diploma Mill would admit my brain as a control ) even though I made it very clear to them that I have NOT been officially Dx-ed with an ASD. I did tell them about my NVLD *diagnosis* and maybe that has something to do with why i'm still under consideration.

Bottom line...I doubt either one of the fMRI's utilized in these research projects will tell me much, if anything, about the long-term memory deficits I believe I have. And for those who think I don't have any.....I had to LOOK in Barbara Oakley's book "Evil Genes" JUST for the aforementioned brief, simple and general explanation of how an MRI works!! ! I have read this countless times before and all I could remember is that it has something to with the stimulation of water molecules in the brain. I also had to look at the pamplet the autism research study at Pitt sent me to describe what they actually do in the two research projects I mentioned. I've read that too before countless times and it ought to be burned in to my brain by now.... but much to my eternal dismay.... it's not.


Anyway.....so here's where the pontentially wrong and stupid part comes in.
I've become SO desperate to get an MRI that i'm thinking of posting my
story on one of those websites where people ask strangers for financial help
for one hard-luck situation they're in after another. I could do this on a site like
Craigslist too of course. The only thing i'd have to lose (I guess ) is my pride
and my desperation is starting to override whatever pride I have left. I mean it's
not worst thing people do for money of course, but still, it's nothing i've ever
even considered before even though i've spent most of my adult life in poverty.

Needless to say....I wouldn't be one of the con-artists or scammers who probably frequent such sights, but still, I am very reluctant to do this sort of thing. On the other hand, it's either this or I have little hope of getting an MRI (at least one which would be focused on the potential neurological origins of my memory deficits) anytime soon.

I would very much like it if I can get one soon because I want to go back to college. If i'm going to do that, i'd like to start classes no later than January 2011. It would be nice to know more about my brain and it's discontents (as well as anything I might be able to do about it's "discontents") before I set out on an endeavor i'm doomed to fail at before I even start. It would be a total waste of taxpayer dollars (in the form of Pell grants, any assistance OVR can offer, etc...) and whatever money my family/myself can scare up to cover my educational expenses.

If these memory problems are of genuine neurological origin and I somehow haven't exaggerated or totally imagined them, then this is no joke.That is....they would be about as debilitating as any brain-based disorder can get in terms of academic, vocational, etc...potential.


Anyone who wants to dispute that can do so, but if semantic and procedural memory is impaired as drastically as I believe mine may be, you're pretty much barred from any academic work beyond maybe an AA in certain subjects and any jobs aside from unskilled ones. I've spent my entire adult life doing just that when i've been employed at all. I'm not prepared to spend the rest of it this way if there's anyway I can help it and i'll fight this until my dying day. What makes it all the worse is the unknown and incongruous aspect of it all. As i've said countless times before.....i'm a person whose neuropsychological evaluations don't look much different in terms of IQ scores and "scatter", memory, executive functioning, attention/concentration, etc....than those of thousands, if not millions, with AS/NVLD. But yet....I seem to have all these learning and long-term memory impairments most who look just like me ON PAPER don't share. I'm tired of the mystery. Forty years of it has ben far too long enough. Therefore...i'm prepared to do anything within legal and ethical means to solve it already. The option i've mentioned here is, of course, legal.

But i'm not so sure it's ethical and it hardly sits comfortably with me.

At any rate....i'd just like to know if anyone has any opinions about my idea here. I'm very hesitant to do this, but I really need at least a chance at some clear answers and possible solutions here. And i'm not getting that chance anywhere else all for want of funds. I know alot of people actually receive major amounts of money from strangers this way. But never in my wildest imagination as a child or even, young adult, did I think my life would come to this. Some people ask for alot more than the $1000-2500 I THINK i'd need (though i've heard some MRI's cost as much as $3500 ) for an MRI and associated costs. Alot of them get it too believe or not. People are alot more generous (though some might say foolish) than they are often given credit for.
.

I'm going to be a downer but I don't think paying for an MRI out-of-pocket is going to help you any, even if you raise all the money with donations.

If you pay for this out-of-pocket, somebody will do it, look for gross problems, and tell you it looks fine. Thank you. Come again.

What you need is for somebody to look over it very, very closely. And for out-of-pocket they won't. They'll just run the test, create the image, look for something completely obvious, and send you on your way.

The research project sounds like a better bet.

What if the MRI does show something, though? Even if there is something detectable, the next thing is what can be done about it. If it's a tumor or something and it's not life-threatening, I'm not sure a surgeon would touch it. If it's something else, maybe they'd try anti-convulsant meds, or stimulants, or ???

I have some cognitive problems, of the short-term memory and EF type, that are labelled vaguely as "cognitive disorder NOS." What my doctors tried was various meds -- the rationale being I could get a $1000 in tests and then try the med, or just try the med see if it helped or not. (Ultimately none were critically helpful, unfortunately.) I suppose the same might be true of training/education about alternative learning/compensating techniques (if there are any).

If you need evidence for SSA/disability, I can see the point, though, especially if the problems are not showing up in standard neuropsych testing.

This is all something i'd have to find out prior to getting an MRI.
I would need to go to a clinic or neurologist who be able and willing to
look over it very closely. First i'd need to explain my situation so they
have a complete understanding of what's going on me with (or what
I THINK is going on with me anyway.) Then there are alot of questions
I could pose to whatever prospective entity/s would be administering
the MRI. Mosaicofminds has given me alot of advice as to the type of
questions I should ask which would be relevant to my particular situation.


To make this easier on myself, i'll C and P what Mosaic told me to ask.
Now this is all something i'll try to ask when they call me from the autism
research study at Pitt next week. But I may not have the chance during this
particular phone call because it's a 30-minute interview and they'll have
their own set of questions to ask me of course. I could find all this out at
some later date prior to agreeing to participate in the study. And I could
ask a neurologist these same questions (and anything else that comes up)
if I must ultimately pay out-of-pocket for this: Anyway..here's some of the
questions Mosaic said I should ask:

"When you do the phone interview, be sure to ask what sort of analysis they're doing. Are they doing a whole-brain analysis, an ROI analysis, or a connectivity analysis? A whole brain analysis means that they look for significant activation across the entire brain. This is statistically weaker, but it's good because it could pick up problems in memory regions even if that's not the focus of the study. ROI is short for "regions of interest." In an ROI study, the researchers pick a priori a set of regions to focus on and then analyze the data in those regions. That's good if the hippocampus and medial temporal lobe are on their list of ROIs, but bad if they're not. If they're doing an ROI study, be sure to ask whether they're looking at the hippocampus, medial temporal lobe, or any other regions implicated in long term memory. A connectivity analysis looks at the likelihood that different regions activate at the same time--if they coactivate a lot, they're probably functionally connected. As far as I can tell, connectivity analyses vary in how much of the brain they cover. Again, be sure to ask if the hippocampus, medial temporal lobe, or any other long term memory areas are being included in the analysis".


"I don't know if problems with procedural memory are as interpretable from MRI. It does tend to involve the basal ganglia and cerebellum, and the motor cortex for procedural learning of movements, so you might want to ask about those areas, too".



As i'm sure you can tell...i'm no expert on any of this. Mosaicofminds has
been very helpful and I think I now I have a pretty good idea of what i'd need
specifically in terms of an MRI/fMRI. No matter what, this isn't going to happen
overnight if it ever happens at all. So i'll continue asking questions and doing
my own research and hopefully when/if the time comes, i'll be able get exactly
what I need.

But as always....thanks for your advice and no doubt it's sound. I would never
go into this willy-nilly. I'm going make sure that whoever peforms the scan
and/or interprets the data knows exactly what my complaints are and exactly
what they're supposed to be looking for.

Last edited by Horus on 14 May 2010, 2:18 pm, edited 1 time in total.

Well....it has often been said there are only two guarantees in life.
In truth, there is only one since plenty of people get away with not
paying taxes. Anyway...nobody can promise me what an MRI will
and will not show in my case. I'm not 100% there is anything TO
show in the first place, at least when it comes to these memory
problems I believe I have. Nonetheless...MRI are relatively good
at identifying neurological abnormalities associated with memory
problems. They can detect hippocampal abnormalities like Formaida
Sclerosis, arachnoid cysts, asymmetry of the temporal horns, lesions
and tumors. They can certainly detect agenesis of the corpus callosum
(partial or complete) though I doubt that would have much to do with
memory problems. They may be able to indicate abnormalities in the
medial temporal lobe, basal ganglia, cerebullum and motor cortex and
these areas too are associated with either semantic/episodic or procedural
long-term memory. I don't think they can determine much, if anything about
white matter. At least in terms of how the white matter is affected in the brain
of person exhibiting the NVLD syndrome.

Anyway.....I really can't say for certain whether anything can be
done about it until I have some idea of what's wrong. In the meantime,
there's many things I have been doing and there's many more thing I
can try to do to improve my long-term memory. Even a modest improvement
would be nice at this point. I can't honestly say i've noticed any yet, but i'll
keep trying different strategies, exercises, nutrients, etc...until
hopefully I start noticing some dramatic changes. If nothing else,
MRI might be able to tell me something about the likely origins of these
problems and then I can do whatever it takes to work on these areas
specifically.

Horus, I hate to be the bringer of bad news here, but in that Pitt study they don't give you the results of your MRI or fMRI or whichever one it is (I can't remember). The results my research partner (in another study now) got say "No gross abnormalities detected." And that's it.

As far as I know....they use fMRI's in the study. You're probably right here, but i'm going to ask them several questions about the fMRI's involved in the study. If the scans
are types of fMRI's I would need in order to detect any possible origins of long-term memory problems, i'll see if there's anyway I could know what my results are. I doubt it, but it never hurts to try/ask.

No matter what...i'd still be willing to take part in this study. Most of
my immediate family lives in the Pittsburgh area and I was planning
on visiting for two weeks this summer anyway. A 3-5 day research study
wouldn't be a big problem. At least i'd be dealing with professionals who
likely know more about ASDs/NVLD and neuropsychology in general then
most of ones i've dealt with thus far.

I am neither a neurologist, nor a radiologist.

I don't see that an MRI is going to be of any use, unless your deficts are linked to a structural abnormality in your brain.

An fMRI is a different beast, altogether. It measures the vascular compensation for oxygen demand in different areas of the brain, as such, it is a good tool for identifying neural activity--but it doesn't indicate what the neural activity is, or whether the level of activity is typical. The fMRI must be conducted while the brain is engaged with different activities, and the corresponding images time-linked to the points of engagement.

For research purposes, an fMRI can sent some baselines that become useful points of comparison, but they are going to be of no therapeutic value unless the fMRI is conducted with a particular view to treatment. If I conduct an fMRI designed to show you visual images, and then sixty seconds later ask you to identify those images, the fMRI will show what parts of your brain were most active at those two stages. If I conduct an fMRI by having you read (or listen to) stories and then ask you questions about your emotional responses, then these are going to trigger different areas.

So, at the end of the day, pursuing these kinds of test in a study is not going to touch on your particular problems of long-term memory, unless that is the focus of the study.

visagrunt wrote

This is why i'm hoping to get a structural MRI. I believe there very well
may be a structural abnormality. In terms of memory, this may involve
the hippocampus, the medial temporal lobe and/or other regions which
are associated with memory. I believe the study at Pitt also includes a
structural MRI. Now that might not tell me anything either and it looks
they don't give out results to most participants. Still....if any significant
abnormalities are indicated on the structural MRI, it's likely they would
tell me something about them. I'll find sometime prior to actually
participating in the study. I have plenty of things to explain regarding
my own situation and at least as many questions to ask them.


It's hard for me to imagine my own deficits, provided they have some
neurological (as opposed to a psychological product of my own
unintentional exaggerations or imagination) basis, couldn't be
linked to a structural abnormality.





I'm pretty sure this is more or less correct. About all an fMRI could tell in this
respect is how active certain parts of my brain are during memory tasks. I don't
think it would determine much about the nature of the activity or whether the
activity is somehow abnormal.


I have no fundamental disagreements with you here. All i'm saying is that the
Pitt study does include a structural MRI too as far as I know. If so...I still doubt
the structural would indicate anything, but if it's a whole-brain analysis MRI, it
MIGHT pick up on some abnormalities in regions associated with memory
even if they're not the focus of the study.

Either way....i'd be willing to participate in this Pitt study even if the MRI's
won't tell me anything in terms of the long-term memory problems I think
I have. If nothing else....at least i'll probably be dealing with professionals who
know alot more about ASDs/NVLD and neuropsychology in general than most
of the psychologists i've dealt with so far.