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Worried. Can someone advise?
Beth Oklahoma
Posted: Monday, January 18, 2016 9:22 AM
Joined: 1/18/2016
Posts: 2


Okay.   In a nutshell, had first and only Grand Mal seizure about 10 days ago and was hospitalized for 48 hours.   I have been put in touch with a neurologist on January 22nd so that will be my first appointment.   While in the hospital they ran a CT scan and an MRI and all the doctor would tell me was, "I see things on your MRI that I would not expect to see on someone so young.". Wouldn't elaborate.    I am 52.   Full time Kindergarten teacher.   The MRI reports in multiple areas of gliosis.   I am new to All of this.   I realize I may be jumping the gun but the little bit of research I'm doing points me here.   thoughts, anyone?
Mimi S.
Posted: Monday, January 18, 2016 9:29 AM
Joined: 11/29/2011
Posts: 7027


Beth,

Probably, not possible, but do figure out how to relax. Practice deep breathing.

And yes, you sound like me. You don't want surprises.

Sounds like you have a good medical team. Since you are obviously concerned about dementia, is your place the best place for such testing? or is there a large medical Center or University with a Dementia/Alzheimer's Department where you will be tested by folks who do this every day, all day.

Do keep us posted.

I just wrote a response to Karen, who is also a teacher. I think you might be helped by reading that.

https://www.alzconnected.org/discussion.aspx?g=posts&page=-1&t=2147524274#ekbottomfooter


Beth Oklahoma
Posted: Monday, January 18, 2016 10:10 AM
Joined: 1/18/2016
Posts: 2


First of all thank you for quick response.   I am trying to remain cool and calm and collected about all this.   Two weeks ago my biggest concern was what coloring sheet I was going to print out for my class!  Ha-ha.    Then my husband steps out for 10 minutes and finds me unconscious on our kitchen floor.    At age 52 I would be right in the zone for early onset dementia.   Until 2 weeks ago, I never even heard the word "gliosis.".   I feel young at heart and still have a 16-yr-old at home!   Teaching is my second career.   I'm very concerned, bordering on panic.   If it IS dementia,.... in your opinion how long before I would have a definitive diagnosis of that?
jfkoc
Posted: Monday, January 18, 2016 11:28 AM
Joined: 12/4/2011
Posts: 21242


Hi Beth....I am a caregiver here in OKC. If I can be of any help please let me know.
Mimi S.
Posted: Monday, January 18, 2016 2:49 PM
Joined: 11/29/2011
Posts: 7027


Beth First things first. Follow up on the Grand Mal seizure and see what happens there.

You have said nothing about any symptoms, so i see no connection between the two conditions, other than a brain scan showed up something.

So first, do the Grand Mal.

Only if you are seeing symptoms or a neurologist suggests it, would you go for the complete diagnositic work up. if that is suggested, go to the best University or Medical School in your area with aCDemetiq/ Alzheimer's Department.

If you are further worried, from your library get a copy of: The Alzhemier's Action Plan by Doraiswamy & Gwyther of Duke  Univ.

Time before diagnosis it is usual to wait about 3 months for an appointment. As you will read in the book, testing usually takes three sessions. So figure another month. 

But the Grand Mal is your priority now.


The_Sun_Still_Rises
Posted: Monday, January 18, 2016 6:05 PM
Joined: 7/24/2015
Posts: 3020


I am so sorry that this happened to you...wow, scary. 

I once had a grand mal in reaction to a medication I had started...3 days before I could remember anything in hospital.

The way to find our re dementia is with a neuropsych test.  It is a 4 hour test, that will show how your cognition is doing. 

Brains are funny, they do weird things on MRI's...what really matters is how well it thinks.

You will want that test anyways...just to get a baseline if nothing else.  So if problems do develop, they can catch it right away. 

Your primary doctor (or any doctor) can refer you for a neuropsych. 

And, if you happen to have it...let me just say that there is a lot (a lot A LOT) of life after diagnosis...good life.  It IS possible to live well with dementia. 

Glad you found us and welcome.  I see nothing wrong with looking at things and seeing if anything sounds close to what you are experiencing.  I am 47, I have young onset and am just entering stage 6...and I am still enjoying life and living well.  Nice to meet you.


Mimi S.
Posted: Monday, January 18, 2016 7:31 PM
Joined: 11/29/2011
Posts: 7027


The neuro-psych is one part of a good diagnosis. Please read the book I mentioned in a previous post for a fuller explanation of what a good diagnosis should consist of.
Iris L.
Posted: Monday, January 18, 2016 10:55 PM
Joined: 12/15/2011
Posts: 18508


Welcome, Beth.  I am surprised that you were not evaluated by a neurologist while you were hospitalized.  I was a pediatrician during my career.  It is not uncommon to have a single seizure with no recurrence.  But there may be recurrence.  Was an electroencephalogram (EEG) done?


Please take some time and think back over the past year or so to see if you have had any changes or symptoms.  Also note if you have had any head trauma, and any medications that you have taken.  Bring this information to the neurologist.  The neurologist will use this information and order other tests.  Then, you may be able to further understand what is going on with you.


You did not mention memory or cognitive symptoms yet, so this may not have anything to do with dementia.  Seizures usually appear late in dementia.


Please keep us updated as to what you discover.


Iris L.

 


The_Sun_Still_Rises
Posted: Tuesday, January 19, 2016 6:36 AM
Joined: 7/24/2015
Posts: 3020


Everyone can have their opinion on what makes for a good diagnostic process...and yet, still the truth of the matter is that we each take different routes to our diagnosis. And not everyone has the funds to just lay out for the most extensive route to diagnosis possible...many just want the short and sweet of it, so that they only have to pay for exactly what they need. In addition, we each have differing reasons for wanting a diagnosis.  The important thing to remember, is there is no "one way" to get to a diagnosis...and no one on these forums should ever be made to feel like there is. 

Some need a diagnosis for certain things, like getting disability...and in that case you might want to more aggressively pursue things.  Other people, just want to know IF something is wrong...and therefore do not need to be all that aggressive in pursing things...and the neurospych can easily tell all that.  It is important, I feel, to not assume what someone's motivations are...or that they are the same as yours.

As well, every single person with a diagnosis I have spoken to about this (and there are many), all have completely different opinions on what kind of doctor to see...and it is always based on who, of all the doctors they saw, who got to their answer.  But these same doctors (thinking here of the Mayo Clinic ones...some like and others hate), some did not like and others loved.  So it really IS individual personal preference. 

That said, there are two main elements of a diagnosis, that I think, are required to know as sure as you can if you have a problem. 

1) you have to establish that you have cognitive defects, that were not there to begin with.  The ONLY way to do this, is thru the more extensive neuropsych testing (the 4 hour test).  The people MOST qualified to run these tests (as it is the only thing they do) is a Neuropsychologist.  They are likely also cheaper than seeing a neurologist.  To be absolutely sure, you need to have a second test after a period of time...to show "decline over time"...as all true dementias are progressive (even with meds and best practices).  It is important to note that the neuropsych WILL differentiate mental health pseudo-dementias from a true pattern of dementia, and injury issues from dementia issues.

2) you have to establish that there is NO medical cause for the cognitive defects...meaning, you do not have a tumor, stroke, B12 or thyroid deficiency, or pathology or infection of some nature, or medication you are taking, etc. that can account for these testing defects.  People often go to both their primary care doctor and a neurologist for these tests...but the ordering doctor is, in my opinion, less important than the battery of tests themselves.  Scientifically speaking, the rule out testing serves to prove the accuracy of the neuropsych test...and is necessary to know if the cognitive defects are dementia, or something else.

Based on this, they know as much as they can without an actual biopsy of the brain...which they generally do not do until after death.

From there, any of a host of doctors (neurologist, geriatric doctor, geriatric psychologist/psychiatrist, behavioral doctor...to name some of the many I have heard people promoting) can tell you your results.  Again, everyone loves THEIR doctor and thinks their doctor's SPECIALTY is the best of the best for the job...but this really isn't true, any of them can do so just as easily...and it comes down to YOUR personal preference in finding a provider that works well and is a good fit for YOU.  Again, there is no "one right" doctor for the job...and no one should ever make you feel like there is. 

The most sure diagnosis you can ever achieve (absent that biopsy) is a "Probable" diagnosis of dementia. 

There is a 14 hour neuropsych test that one could take that may be able to show if there is a pattern of decline suggestive of Alz, Lewy Body, or FTD, etc....but doctors will usually state their opinion without this test.  However, and this is a salient point, without that extensive 14 hour test...it would just be an opinion...and as with opinions, ask different doctors and you will likely get different opinions. 

To sum up, again, the neuropsych test will show you what the problems are and where they are...but not why.  The other testing will tell you, if you are lucky, why...if there is no why...then it is dementia of some nature.  Only now, the new DSM5 it is "major neurocognitive disorder" as to help do away with the stigma of the term "dementia."  In any event, true dementia (whatever form it is in) is progressive and fatal.

Not everyone cares to know which type they have.  I personally find this very beneficial for various reasons, but I have heard many people on here say they find no benefit in knowing which it is.  And again, whatever doctor you talk to will likely throw their opinion out there of which type they think it is anyways.   

The true source for what is needed for a diagnosis of dementia, or as it is now called, "major neurocognitive disorder"...is the DSM 5 which clearly lays out what the criteria are for diagnosis...and that is readily available online, no need to buy any book. 

Hope that helps clarify.


alz+
Posted: Tuesday, January 19, 2016 10:08 AM
Joined: 9/12/2013
Posts: 3608


I would focus on the seizure diagnosis. The bright spots on mri-s I had those and was diagnosed with MS 30 years ago. Then the bright spots went AWAY. So told I do not have MS.

Treat your own sense of what your difficulties are and you'll be sure to not be wasting precious time. The 4 hour neuro psych test needs a baseline to have any meaning, and even after that some people start doing better again. Not sure anyone even knows what dementia is.

wish you lots of luck, first things first, sending you love and courage.