Second Opinion

[iamfm]

I had an incident happen about 3 years ago, started with severe unrelenting head pain, then an episode of soiling during sleep, followed by extrene confusion at work, couldn't think, couldn't use a computer, losing time, unable to hold onto a thought.  To cut a long story short, medical merry go round, CT, MRI - someone described it as a swiss chess brain,  lumbar puncture, blood tests, etc etcand ended up with two possible explanations.  Stroke (brain attack) embolic infarct and Encephalopathic illness for which no cause can be found.   Have made a slow recovery and eventually back to work full time after a 6 month recovery at home, although I had to change jobs as I could no longer work in the capacity as Information Technology Network Administrator and I am now an admin officer and struggling at times with that.  Still getting very confused.

I feel like I am going along OK and then I get very confused again, can't remember simple things like whether I have taken my BP pills and have had to go back to putting them in a weekly dispenser.  Cant organise or plan work, and if I am not working just sit and stare, I am fine if someone tells me to do something, eg my sister my ring and say get dressed we are going shopping and I can do that, but if I am sitting thinking about doing things, I just cant seem to make myself move.  

I also have severe pain in my upper back and neck, pain in the back of my head (sharp stabbing pain the comes and goes) and radiates around the sides to the front and head feels extremely heavy for several months.  

I have had 1 episode of passing out, I had strained my calf muscle and was wheeling myself around in an office chair, and passed out whilst sitting down.  I have a couple of other episodes where I felt like I was going to pass out, felt woosy and head felt like it was dropping back but I didnt pass out, or I dont think I did.  These sensation passed after about 3 - 4 month and now my head just has that heavy feeling, .  

I also have these strange episodes that seen to be happening more often, I will have an overhelming sense of something awful and I will be crying, tears running down my face, but the overwhelming feeling last but a split second, and then I have a wet face and have no idea why, only that I can remember it was a really strong feeling.  Often happens just after I have eaten, or sometimes when I am driving.  It is quite odd

I have since developed a 4th nerve palsy causing a blurred vision at times that I was apparently turning my head on the side to compensate.  Now have glasses to fix - operation suggested... declined that as they cannot seem to give me an explanation as to the cause.  Further MRI's conducted - holes (white spots on the MRI) are all still there but doen't appear to be any more, the report said "however, there are extensive bilateral subcortical T2 hyperintensities some of which involve the U fibres"  Conclusion - The findings are not typical for demyelination.  It is more likely to be a small vessel disease.  Differential diagnosis include coagulopathy or vasculothathy including hypertension diabetes heavy smoking".  I am 50 years old, 47 when this all started.  Can you tell me what this MRI report means in lay mans terms - what are u fibres.  Small vessel disease - is that progressive?   Does anything I am describing match anything in this MRI report.   Help, I am so confused and I need to understand what is happening to me.

[caregiver222]

I have absolutely no idea what your disgnosis is, nor can I suggest treatment. I am not satisfied with what you have been told, however. The emotional symptoms suggest involvement of the endochrine system, specifically the pituitary, and the most likely cause for injury is a slow bleed. Get copies of every page of your medical records. I don't know about your insurance coverage, but you should seek a diagnosis from another medical facility, preferably a teaching hospital. Or a diagnostic center.  A lot will depend upon which "service" you get directed into. Hospitals have little fiefdoms, and once you get into one switchyard, it is difficult or impossible to get into another one because you are in someone elses ricebowl. I have seen stroke patients die because they ended up under the care of the vascular service in one hospital, for example. Fifty years old is young. It has been a long time since I was fifty. One simple thing to do is to increase microcirculation by means of substances that increase the lubricosity of the red blood cells. Omega-3 fish oils have been proven to provide this benefit. Small vessel disease may or may not be progessive. Small deposits inside the interior of blood vessels, for example, are sometimes part of the immune systems response to encapsulate blood-borne bacterial infections. There is at least one medical study suggestive that an encapsulated jaw infection from tooth decay, left untreated, can cause atheroschlerotic deposits within the blood vessels over time. Medicine is still an art, in many ways.

[caregiver222]

There is also a possibility of Parkinson's, although your symptoms are by no means typical. Small tiny handwriting is a flag. The postural hypotension, which your post suggests, is also a Parkinson's flag. Don't give up hope, whatever you do.

[iamfm]

Thank you for your comments, my hand writing is not small, however it did change a year or so before the episode that happened 3 years ago, I used to have a very neat hand writing and now I dont.  Although like most things now I can write like I used to although it is now a conscious effort, there seems to no automatic pilot anymore.  I have to concentrate on absolutely everything, writing, eating, walking, working, simple admin tasks that I could do 25 years ago with my hands tied behind my back are now a major task, simple things like changing channels on the TV with the remote control, unless I consciously tell my hand to press the buttons, I could be watching something I dont want to watch for sometime.  The process of having a thought and your body reacting, simply doesnt seem to work the way it used.   Initiating things is now a consious thought process and a struggle most times, I dont seem to just do things unconsciously anymore, walking, standing, thinking.  I know I am not discribing this well but this inability to do things was what I was left with after my recovery.  When I went back to work, I couldnt even work out how to turn the photocopier on, I knew it was a photocopier, I knew what it was used for, I knew I had used one many many times but could work out how to do it, same with computer, etc. Once I was showed/reminded how to do things I was fine with simple tasks, things like my knowledge about networking computers etc has never come back, I use a computer now, but know I dont have the same knowledge I had before, or at least cant access it.  My recovery period at home was much the same, simply trying to work out how to manage the housework.  This has been a routine that I have been doing for 30 odd years, however couldnt work out how to turn on the dishwasher, pressing buttons, nothing working, I had no idea that it had a lock on it.   I choke on food, if I forget to concentrate, and am eating, breathing and listening to someone at the same time.  As I have learnt to concentrate of everything I do now, the number of times this happens has reduced.   I am in Australia and our health/hospital system could be different, but the second opinion they came up with was the Encephalopathic illness is was after spending a week in hospital a year after the episode, as I was taking 9 different tablets a day morning and night and I was not going to continue to take them unless they could give me a diffinitive explaination as to why I am no longer the person I was a year prior.  I was blood pressure, cholesteral, plavix, fluid retention, antidrepressant, epilum and then that changed to neuronton.  They initially thought that the sence of loss of time, whole days, was some form of partial seizure, however after the week in hospital under a neurology and stroke team and lots and lots of testing, including being connected to video eeg monitoring.  Slowly medication was all stopped with the exception of BP but I was on that long before the episode.  Antidepressents stopped after 18 months as the tears for no reason continued whilst I was on them and had full pychiatric assessment whilst in hospital and felt the meds werent helping.  Video eeg determined no seizures and therefore this medication was stopped, cholesteral, plavix, fluid retention etc were all prescribed at the onset as I was under a heart specialist whist they were looking for the cause of the stroke, and whilst in hospital and it was thought that the damage has been caused by an Encephalopathic illness, these heart meds were also stopped slowly and there was no evidence that there was anything wrong with my heart or need for this medication, swelling in my legs had subsided dramatically by then and the fluid tablets werent needed.  The sence of losing time they tell me is because on the video monitoring they picked up that was some slowing of the left temporal that might explain the cause of losing time.  I now have to make a conscious effort to put things into memory so I can remember days for example - at work I will have to consciously think, today is Tuesday and I am doing the funding claim, then tell myself a few times tuesday, funding claim tuesday funding claim.   If I dont do this and later I am asked when I did the funding claim, I will not no recollection of what day, I will remember that I have done it but cannot relate to a time or day.  I have to consciously relate events, tasks, feelings to days or times or I cannot recall when things happened.   Holding onto thoughts and putting them into memory is difficult and I clearly understand the meaning of in one ear and out the other.