Confused and muddled, with memory problems

[londonloves]

I'm a 34 yr old male, who’s lived in the U.K all my life, who was diagnosed with having M.E / Chronic Fatigue Syndrome some 11 years ago now. Prior to this time, I had always been lucky enough to have very good mental and physical health.

I've always been a bit sceptical of this diagnosis, as I'd never actually been that fatigued, but have had many neurological / cognitive complaints over this time, including persistent headaches, short term memory loss, problems with natural thought process / brain fog, etc, etc. I was however happy with the investigations that were carried out at the time of diagnosis 11 years ago, and again about 5 years ago, when I last experienced a severe flare up of symptoms. These investigations between 1998 - 2004, have included 2 MRI scans, a CT scan, and several lots of full blood tests being carried out, all of which have come back next to normal. In 2004, I also had Neuropsychometric testing, the results of which, although weren’t normal, were what could be expected of someone with M.E - i.e. poor concentration, etc.

Between the summer of 2004 and December 2008, although not back to being 100% health wise by any means, I was certainly able to live a relatively normal life, in that I’d been able to attend university part time, have a social life again, and was more than capable of taking care of domestic day to day tasks - cleaning, shopping, managing finances, etc.

Late on in December 2008, I started to experience problems with my concentration faltering a little, as well as finding things a little more difficult to process mentally than of recent times.

As the month of January 2009 progressed, I started to experience diarrhoea most mornings upon awaking. Cognitively, I started to become a little muddled and confused, along with having short term memory problems. Mental tasks, such as writing emails for example, had become notably harder.

I started to have problems selecting correct words & using wrong words more often. Written sentences started to no longer ‘compute’ very well, and the same problem started with verbal communication, as I started to need to ask people to repeat themselves, as I wasn’t able to process what they were saying to me on their first attempt.

I’d now started to feel constantly woozy - like I was drunk.

By the end of the month, I‘d lost over a stone in weight. I’d been around 13 1/4 stone throughout most of 2008, but had now dropped to around 11 1/2 stone.

Into February 2009, the drunk feeling had become worse, and I was now experiencing diarrhoea every morning upon awaking, and after nearly every meal, irrespective of what the meal was.

My legs had begun to feel very ‘jelly’ like and I was feeling a little unsteady on my feet.

Muscles felt like they were trembling a lot of the time - especially in lower back and neck, and my hands were visibly shaky at times - especially when trying to perform intricate tasks, e.g. using a screwdriver.

I’m now feeling confused & muddled from the moment I awake, until I go to bed. Simple tasks have become mentally overwhelming, and perplexing - even just making breakfast, or having a bath.

My sleep has started to become very disjointed - I’ll sleep for an hour or so, then wake every hour, on the hour, getting an average of around 4 hours a night.

Into March 2009, the feeling of being drunk, continues to feel more and more intense. I’ve become quite clumsy, and have noticed I'm holding hands in strange positions in front of me quite often.

By now, my judgement is feeling quite impaired, and I’m feeling increasingly unsteady.

My muscles have now started to twitch all over my body, at times, quite noticeably, and for sustain periods of time.

I’ve started to mistake a conversation I’ve had with one person, for one I’ve had with someone else.

My eyes have started to cloud over at times, impairing vision temporarily, then clearing

By April 2009, my conception of time, and what day it is has become somewhat hazy. I’m finding it extremely difficult - to the point of being impossible a lot of the time - to have
conversations. Increasingly, the moment I've said something, I'm forgetting what it is
that I've said. Have been told I’m repeating myself again & again.

I’ve become increasingly blank in mind when asked something. Have also been told I'm
becoming more blank, and unresponsive in facial expression.

My awareness of what's going on around me, along with awareness of time, date, etc has
diminished significantly. Disorientated frequently now.

The muscle twitching has become pretty much constant , and much more severe -
occurring in several places simultaneously. I’ve also started to experience mild
involuntarily jerking during the daytime.

At the beginning of the month, I’d started to experience strange episodes when asleep,
namely - waking in a semi conscious state, and not being able to swallow properly - this
feels like I'm choking.

Now into the current month of May, and I’m in a constant daze like state, wandering
around my apartment, with no purpose, not knowing half the time, how I’ve come to be
doing, whatever activity it is that I’m doing.

I seem to be making lots of pointless movements. I.e. moving arms as I'm going to do
something, but then just stopping. My movements are also feeling increasingly rigid and
unnatural.

Finding it incredibly difficult to manage bills, and keep track of finances. Was
previously quite adept at doing so.

I’ve now started to need prompting on occasions to do normal activities, such as when
to go to bed of an evening. This said, I’m still able to bathe myself, and prepare very
simple meals for myself i.e. toast, soup, etc, but am having to write down when I’ve eaten
meal, otherwise as crazy as it sounds, I forget a lot of the time that I’ve already eaten.

Understandably, I’m very scared as to what’s going on. However, my G.P, an M.E
consultant I’ve seen twice since the turn of the year, and a neurologist I saw in April 09,
don’t seem to be that concerned about me, attributing a lot of the problems to either
depression or anxiety. I’m worried that because I’ve had a pattern of similar symptoms
over the years, although I must stress, never, ever this severe before, they see this, and
just attribute my current patch of ill health to being more of the same, that will eventually
sort it itself out.

I don’t consider myself to be particularly depressed or anxious presently, as the only
thing that’s preventing me from partaking in normal activities, socialising with friends,
etc, is the symptoms I’m currently experiencing - principally feeling confused and
muddled 24/7. My doctor has put me on 75mg of Venlafaxine since February, with a view
to this alleviating symptoms, but of course, it’s done nothing. I was also briefly referred
to a community psychiatric nurse, who promptly discharged me after 2 appointments,
believing I didn’t have any sort of significant mental health problem, and the very mild
depression and anxiety I did have, was a direct consequence of the symptoms I’m
experiencing.

My most recent lots of bloods I’ve had taken, at the end of April 2009 - thyroid, etc, all
came back normal. I’m currently waiting for another MRI scan, although have been told
in no uncertain terms, if this turns out to be normal, that no further investigations will be
carried out on the National Health Service, and I’m not in a position financially, to pay to
see anyone else privately.

In the meantime, I’m having to rely on my elderly father to do my shopping, pay bills, etc,
whilst it feels like my capacity to function mentally, is slipping away from me as
every week passes.

Any advice, with regard to possible causes of symptoms, my next course of action, etc,
would be greatly appreciated.

[londonloves]

Hi GG,

Many thanks for your message.

Oh, I accept I have CFS, and as I've had it so long now, have no problem dealing with it, even during times of relapse, as I've more than accepted the illness, and have tried to get the most out of life I can with it over the years. Up until earlier this year, I had a job I loved doing, and was able to cope with, without any major issues, despite the CFS, but since this period of ill health started, could no longer cope with, and had to leave.

My concern currently is - given the severe neurological symptoms I'm experiencing, along with relatively non-existent fatigue - is that this is something that is entirely unconnected to the CFS, but given my past history with the illness, it's just much easier for doctors to attribute the symptoms to the CFS, depression, anxiety, etc, than actually look further into my complaints, than they've done.

Over the past six months, I've become increasingly confused, muddled, disorientated, feeling more and more drunk with each day that passes, with a short term memory that's gone completely to pieces. Most of the time, I don't feel like I even know what I'm actually doing. It's taken me about half an hour, to figure out how to start my computer up, and actually get online even now.

Never, in the past eleven or so years, since I was diagnosed with CFS, have I experienced neurological  symptoms, anywhere near as severe as these, or ever heard of any fellow sufferers who have. It's for this reason, that I'm concerned something else is going on, that's going undetected, despite my recent MRI brain scan and blood tests, having come back normal.

I wish you all the best with your health.

[ggreg]

Dear London,
You do indeed apparently have severe chronic fatigue syndrome.  Your symptoms line up with that.  There are drugs that are now being used to treat it, that you might avail yourself to.  Read the two articles at the links below, they will explain what I am saying.  If this helps, I have many of your problems, especially with taking care of my home responsibilities (baths, bills) and communication problems when talking to people, I am on disability, thank goodness, and have learned to live with the idea that I gotta accept the way I am and do what I can with what I have.  It's very tough to be hit with health issues, and even harder to live with them, I'm in my 50s and I still feel like I've lost soooo much.  Try to get yourself in a support group, maybe online, so you'll have someone to trade misery with... I do, and I also have a husband who is as goofed up as I am, and my psychiatrist and my mother, a few friends are left, and they all help me a lot.  I hope this helps!
GG

http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm

http://chronic-fatigue-syndrome.suite101.com/article.cfm/anticonvulsants_cfsme_and_fm
.....

[londonloves]

Addtional blood tests - including tissue transglutaminase, calcium, magnesium, zinc and ESR, all normal. So, still no answers...

[londonloves]

Everything has come back normal with the MRI scan of the brain, so still none the wiser as to what's going on...?