PET brain scan and negative MRI

[LynnL]

I recently had a PET scan of the brain with the interpretation of "abnormal for a 27-year old; diminished blood flow to the parietal lobe; left greater than right" in which the radiologist suggested a recent MRI.  The MRI came back negative and my doctor that ordered the PET scan suggested that this may be normal for me and that I should not spend thousands of dollars trying to figure out if and what I may have.  I have spoken to a neurologist whose advice is that the PET is an investigative tool and that I should have more testing to determine if there is more to this.  The reason I had the scan is I am having speech problems.  What I want to say and what comes out of my mouth are not the same.  I am having problems carrying on conversations.  The words I want to say, I pronounce with the wrong consonant.  I am also having memory problems.  I can't remember the words I was told and therefore can't repeat what was told to me because I can't remember the exact word.  Other symtoms I have had are confusion, fatigue.  I have been out of a job for quite some time and these symptoms are rendering me helpless.  My question.. is anyone familiar with a PET scan and how to interpret the results.  I was told that the colors of a PET scan would interpret brain activity, but I've also been told that the colors can be set by whoever is running the test.  As well since the MRI is positvie that rules out a lot of diseases, but if PET is preventive could I later have a plaque or tumor appear on a later MRI.  I just don't know where to go from here.  I don't want to spend thousands of dollars and not turn up anything, but my quality of life is suffering and my instinct tells me something is seriously wrong.  Any help please.

[LynnL]

I hope your appointment went well...

[LynnL]

You are too young for drinking to be the cause of any of your symtoms.    That is your guilt in trying to determine if what you are going through has been self-inflicted.  But hold off casting judgement on yourself until you know more from the doctors test and results and be completely honest with the doctor.  If you really feel that you have inflicted this upon yourself in some way, discuss it with your doctor.  In his professional opinion ask him if anything you have done could have caused this.  Again, without knowing what it is you can't pinpoint a cause.  Everyday before you see your doctor, any questions you have write them down.  When you see your doctor, discuss the issues with him.  That is what you are seeing him for..diagnosis, treatment, and peace of mind.  

[JaclynDT]

I'm seeing a neurologist

[LynnL]

Are you seeing a general medicine doctor?

[JaclynDT]

I have been having migraines for the last 2 years if not longer, my doctor has tried all kinds of medications on me- from anti depressants to sleep aids and then he finally tried Topamax. The headaches, speech problems, and memory loss all happened around the same time. The tingling sensation only started when I began the Topamax. I figured that it may just be a normal symtom maybe when your body is trying to adjust to the medication, but now that I've been off for about 2 weeks and the sensation does not seem to be subsiding, that is what is causing the concern.

Just like you, so far every test I've taken has come back normal, and I do not by any means think that the feelings I have everyday and the amount of pain I go through everyday are normal!

I've constantly wondered if drinking has been a cause of most of this. I started drinking at an early and I'm really starting to think that it could be the cause of all this, but then I look around and see people who drink alot more than I and are just fine. I think I'm just trying to narrow all the possibilities down, and still not finding clarity,

I definatly think you are right as far as needing to further investigate your situation. We seem to be in the same boat as far as not getting answers!

[LynnL]

You were only on the medication for such a short period of time that I'm certain no permanent damage was sustained from a few weeks on the Topomax.  Why would your doctor put you on Topomax?  Were you experiencing headaches?  Does he think you are having seizures, if so have you had any episodes?  Did your speech problems, memory loss, and tingling all start after you were put on the medication?  If so, it is very likely that your problems are only occuring as a result of the Topomax.  Even if you are experiencing withdrawals from stopping the Topomax suddenly, the symtoms should stop and you should not have any lasting damage from the medication.    

As far as any diagnosis for me, the doctor stated the PET scan results could be be from a chronic infection, or from disease but I've had every blood test imaginable, including a lead poisioning test and the MRI ruled out MS or any other disease where plaques or tumors are involved.  So no, I haven't been diagnosed, and at this point my doctor is taking the position that this could be normal for me, but I don't believe this.  The results on the PET scan stated "abnormal results for a 27-year old with diminished blood flow to the parietal lobe".  I'm not a doctor and I can't diagnose myself, but I do think these results should be taken into consideration and should be further investigated.  Do you know any information about PET scans?  Maybe you should suggest to your doctor that you have a brain scan.

[JaclynDT]

Everything you are saying sounds exactly how feel. My systoms have been going on since I started the medication which was around the 8th of October, but I only took it for a couple of weeks and decided to stop when I did not like the way it made me feel I have been off of it for 2 weeks or so and I'm still having the symptoms, and after researching about Topamax I have realized that I probably should not have just stopped the medicine right away, but should have gradually weined myself off of it. After 2 weeks of being off and still having the tingling sensation I'm starting to worry that some kind of permanent damage has taken place. And i totally understand what your saying about the memory loss, how do you think I feel? I'm only 20.........
After all the testing and all the doctors appointments that you have had have they given you any clarity as to what could be the cause of all this??

[LynnL]

I hope your test goes well on the 12th.  I have had an EEG and Cat scan before, years ago and the results were recorded as normal.  The doctor ordered an EEG to rule out seizures and the only caution was that the EEG was a little slower than normal, but it could have been from medication.  I never asked about this and the doctor never seemed worried about it.  The Topomax could effect your results.  I would ask about this before the test.  I would definately address the fact that the tingling in your brain started after you started the Topomax.  You could be having an allergic reaction to the medicine.  I've also been informed that unless you are having a seizure at the time of the EEG that the results will not be able to detect seizure activity.  I would make certain about this on your appointment.  

I'm curious..how long have you had these symtoms?  This has been an ongoing undiagnosis for years for me and I just recently had a PET scan of the brain and it is evident that yes there is a biological basis to my symtoms.  I'm just not certain where to go from here.  I know if I go to a neurologist, he is going to order everything from another EEG to nerve stimulation tests.  I've been going to so many doctors for so many years, I'm just about ready to give up and say maybe it is all in my head.  (The problem that concerns me the most is the memory loss.  I can understand this happening at an older age, but I'm only 27 yrs. old.)

I understand how worried you feel, but even for me after the tests came back positive, I would be relieved, but upset in a sense, because the cause had still not been found, and I would feel as if I am starting all over in a sense..going to another doctor, telling my story again, wanting to know.  If you know what you are dealing with then you can handle the situation.    

[JaclynDT]

I am having the same exact problems. I've had an MRI and a Cat scan done and they both came back normal, but those tests do not show the activity in the brain, nor if the brain is functioning properly. I am having a EEG done on the 12th and I'm very worried about it. I have been having speech problems, memory loss, and now the newest one... tingling in the brain which I started noticing right after the doctor put me on Topamax. I am very worried b/c my doctor can not seem to give me any answers and I feel like no one understands what Im going through. I am right where you are when you said that you believe something is seriously wrong.