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WildRose
Posted: Wednesday, July 6, 2016 9:27 AM
Joined: 7/6/2016
Posts: 19


(Cross-posting... or am I just repeating myself, LOL?)

I have largely stopped socializing because I fear embarrassment (I know, I know). It's easier to stay home, alone, where no one can see or hear my lapses. 

A few weeks back, I was at the gas station - a friend and I both stopped to gas up our respective vehicles. I'm thankful that he was there, as I could not locate the release lever for the door over the gas thingy (anyone else have problems with words? I use "thingy" a lot these days...). I tried anything that looked remotely like a release lever, but could not for the life of me recall how to do this very simple thing that I have done hundreds of times. Fortunately, the friend saw my struggle and provided the needed help. 

Other instances have not been seen by others - forgetting, for example, how to use my stove, microwave, blender, Garmin, etc. It's as though I am constantly re-learning these things; I never know if the re-learned information is going to remain with me, or not. Oddly, I can recall the feelings associated with some of these instances, but not exactly what I was trying to do. 

It's frustrating - but, on the other hand, these glaringly obvious lapses did prompt me to visit my primary care doctor and a neurologist. The PCP wrote that her clinical impression was "Mild cognitive impairment". I just saw the neurologist yesterday, and am awaiting a call to schedule neuropsychological testing. Hopefully, they can figure out what's going on. 

In addition to the neurologist visit, I have had blood work - nothing but high cholesterol really showed up, and that is down 36 points (credit diet and exercise). I also had a CT scan, which yielded the following:

  Ventricles and sulci are  mildly prominent.. There is decreased attenuation throughout the   periventricular white matter consistent with small vessel ischemic  disease, mild in severity. There is no abnormal intracranial mass.   No evidence of acute infarction. There is no extraaxial fluid  collection. Basilar cisterns are widely patent.     IMPRESSION:   1. Mild chronic small vessel ischemic disease.  2. No evidence of intracranial mass, acute intracranial hemorrhage,   acute infarction, or midline shift.   3. Mild Cerebral atrophy.  

My PCP was concerned about these findings and even stated that it was possible that I'd had some minor strokes; the neurologist did not mention this, and did not think these were grossly unusual findings. 

I've discontinued all anticholinergic medications I was on. I think there has been some improvement, but how much remains to be seen (these were stopped 6/1). Some things I've read indicate that the effects of these drugs may be persistent. 

It's been frustrating dealing with the word-finding issues; I formerly did a lot of writing, and while I still can generally accomplish what I wish to, it's so much harder. I live alone (my very DH passed away suddenly in 2007), so there is no one around to observe my day-to-day difficulties, and I'm having problems even describing some of what I experience to the medical folks. I do have a gentleman friend who has noted some of the changes, and have taken him along to relevant appointments. Reading has become slow and painful - I misread words or leave them out, and have to keep re-reading everything to make sense of the material. Reading has been my greatest joy in life (okay, maybe the grandchildren have nudged it out of first place), so this is really difficult for me. I am struggling more with basic tasks. I taught computer courses, installed servers and networks, network admin, project manager, technical writer, programmer/analyst, and now forget how to do simple things, have problems working between differing devices, etc. 

Everything requiring even minimal cognitive effort has become much harder - I have never had to struggle to learn anything, throughout my entire life. I've also become much more irritable , easily overwhelmed, and - messy. 

That's my disjointed account; hopefully, some of you will be able to make sense of it.  


WildRose
Posted: Wednesday, July 6, 2016 9:30 AM
Joined: 7/6/2016
Posts: 19


Apologies for the forum topic - I can't find a way to fix it - should have been, "New here".
The_Sun_Still_Rises
Posted: Wednesday, July 6, 2016 10:17 AM
Joined: 7/24/2015
Posts: 3020


Welcome, glad you here...an I know just what you mean!  You seem somewhat younger by you pic than what doctors tend think of may have this...so they are more likely overlook this as a cause. 

The testing you want is called a NeuroPsych Test...it takes 4+ hours...an that will tell doctors what you can no tell them. 

Dementia is brain death. It happens over time.  There is a thing called Vascular Dementia that you might want get acquainted with. The NeuroPsych test will tell you if you have the cognitive decline that fit the pattern it.  All the other tests are try find a fixable cause of it...but the other tests can no diagnosis it...only the neuropsych.   

It sucks have these symptoms...but you also no alone in it.  And, it might be worth you effort find some ways over-ride these symptoms or work around them.  Like putting up signs that remind you.  Learning live with it will help a lot in long run. 

Hope that helps.  Hope others chime in here soon.  Look forward hearing more how things going.  Feel free ask anything here. 

<3


Iris L.
Posted: Wednesday, July 6, 2016 12:05 PM
Joined: 12/15/2011
Posts: 18719


Welcome again, WildRose.  I responded earlier on your other post.  You are taking the right steps.  Depending upon the results of your neurocognitive testing. you may be offered medication which can help with your word finding and other difficulties.  


Note--the medications will not remove all your problems and return you to normal.  But they may make you better.  This is how it has been for me, after seven years on Exelon patch.  They main benefit is that my medications allow me to live independently and make my own decisions and not have to rely on unreliable people.


I am glad you have found us, because you will need support.  Feel free to post whenever you like.  We are here for you.


Iris L.


Agent 99
Posted: Wednesday, July 6, 2016 12:57 PM
Joined: 6/7/2013
Posts: 2166


Mildly prominent ventricles can be suggestive of a form of dementia called Normal Pressure Hydrocephalus.  Ventricles can be enlarged for many years and then observable symptoms begin.  NPH symptoms are cognitive impairment, gait and balance changes and urinary and/or fecal incontinence which can be intermittent.  Most doctors will not diagnose unless 2 symptoms are present as well as enlarged ventricles.  

My sweetie had NPH but it was complicated by severe TBI from a fall due to balance/gait.  His cognitive impairments were not similar to yours.  His memory seemed fine but he had executive function problems.  

NPH can be managed with the implantation of a shunt that drains cerebrospinal fluid from the ventricles to the abdomen.  Many people have complete reversal and no complications and others have slight improvements and/or many complications.  My sweetie experienced phases of improvement and decline as well as all the serious complications associated with NPH brain surgeries.  

I strongly recommend that your neurologist explain whether NPH is a possibility or not based on the scan findings.  NPH is kind of an orphan dementia and is usually overlooked and misdiagnosed.  If there is any possibility then it would be worth finding an NPH specialist.  I can help you with that.  There is an NPH forum on yahoo.  The forum moderator has a list of patient rated neurosurgeons who specialize in NPH throughout the country.  NPH is followed by neurosurgeons not neurologists but most people start with the neurologist then jump over.


WildRose
Posted: Wednesday, July 6, 2016 1:21 PM
Joined: 7/6/2016
Posts: 19


Thank you so much for the responses; you don't know how much I appreciate having a place in which I can share these things.

It's hard to share with my children. Though my eldest and his family are only 20 minutes away, they have two little ones (2 1/2 and 2 months), and they are naturally very busy - I do not want to burden them nor cause undue worry. I see them every week or two, but it's usually only for a couple of hours at a time; they really don't know much other than what I've shared with them. My second son is in the Minneapolis, MN area and is mildly autistic. My daughter is in the Detroit, MI area - she and her DH have four children, ranging in age from 10 months to 8 years - I've told her very little, again, so as not to burden her. There will be time enough after I complete the evaluation and can hopefully give them factual information. 

Vascular dementia may be a possibility, of course, though the neurologist did not think that the changes in my CT were very significant. 

I've undergone neuropsych testing previously - 2 years ago. I don't recall much about it. The same psychologist is going to perform the testing again, and called me this morning to set up the appointment - fortunately, they had a cancellation, and are able to get me in next week. I was told that it would take approximately four hours. 

Thanks for the compliment, Sun - I'm 58. I think that's a little young to be having these lapses, too. Other people my age and even much older don't seem to have as many problems, at least obvious ones. 

 


WildRose
Posted: Wednesday, July 6, 2016 2:26 PM
Joined: 7/6/2016
Posts: 19


@Agent 99, I had never heard of that; thank you. I've written it down. 

Since some brain atrophy is normal, and ventricular/sulci prominence also increase as we age, how do doctors judge what is "too much"? The neurologist was looking at my CT scan while I was in the office yesterday, and said he didn't really see anything abnormal. I found it fascinating, and wish I'd asked more questions. 


Agent 99
Posted: Wednesday, July 6, 2016 3:35 PM
Joined: 6/7/2013
Posts: 2166


The diagnostic criteria have not been formally adopted by any medical association.  A group of NPH neuros published guidelines for such a protocol.  I have attached it.  It's very technical and in depth and I encourage you to read it.  Table 2.1 lists the imaging findings.

My sweetie had a car accident in 2004 with a head injury.  The CT scans and rescans during hospitalization showed enlarged ventricles.  THe neurosurgeon did not ask me if he had any of the NPH symptoms.  He did not at the time.  The neurosurgeon attributed the ventricles to a childhood disorder that he never verified my sweetie had.  Fast forward 6 years and my sweetie starts with symptoms - urinary attributed to prostate- wrong; gait and cognitive not addressed.  May 2012 my sweetie falls walking the dog and suffers major head injury.  CT scan at the same hospital as 2004 identical.  This time NPH diagnosed by astute residents who listened to symptoms I described.  I see the 2004 as a missed opportunity to be informed of the possibility of NPH and be put on the lookout for symptoms.  Had I known the symptoms my sweetie would have been treated years earlier and we would not have had to go through the major life changes the lack of diagnosis caused.

It's so important to consider this and have it ruled out by a knowledgable Doctor.  YOu may consider giving the docs and neuropsychs a copy of the document.  

http://www.unilim.fr/campus-neurochirurgie/IMG/pdf/part%202diagnostic%20of%20NPH.pdf


WildRose
Posted: Wednesday, July 6, 2016 4:06 PM
Joined: 7/6/2016
Posts: 19


Thank you again.
alz+
Posted: Thursday, July 7, 2016 10:44 AM
Joined: 9/12/2013
Posts: 3608


WildRose wrote:
Apologies for the forum topic - I can't find a way to fix it - should have been, "New here".
**************************

yes, once you type something in topic heading it is there unchangeable! notice it made no difference to your friends here.
wishing you the best and look forward to reading about your progress.  

*****************************


llee08032
Posted: Thursday, July 7, 2016 10:39 PM
Joined: 5/20/2014
Posts: 4408


Was curious about the "n." Welcome WildRose! Thank you for joining our board.