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The Phoenix and the Fallacy

I came to Phoenix Rising because I typed the following search into Google:

abnormal eeg and "functional neurological disorder"

I found the link entitled "You think ME is bad - try having a psychogenic movement disorder"

Intrigued I clicked and read the first and following entries to a thread that impressed me so much I wanted to be part of this very intelligent and insightful forum.

Actually, the first thing I thought was 'oh my god, if people with ME feel sorry for people with my diagnosis, then I really am bummed!' But I appreciated the gesture. It was a rare validation of a quiet struggle by a group of unhappy souls who really need some help - and perhaps a kick in the pants. We live with uncertainty and are locked in a dance with the psychogenic fallacy. What a beauty! No wonder I'm so dizzy.

I made myself known to the forum as one such subject of the discussion and we go from there.

Two weeks ago I had an EEG. That was because I had one of my "pseudoseizures" in front of my psychologist. Having never had an EEG I was still considered to be having fake shakes of no real importance. Such are the words whispered over my head while I am vaguing out and unable to speak intelligibly - while my eyes are fixed and my face has gone alarmingly red and puffy, my heart is racing and one corner of my mouth drooping down - you know... all that fake stuff. I don't know whether she passed on the info to the neurologist because I said something about wanting an EEG or whether the neuro thought that was weird enough to warrant a look. Whatever reason it was, I received an unexpected phone call asking me to book in.

During the hyperventilation part of the EEG I had another seizure. The technician wouldn't tell me anything about the readings because of course I couldn't possibly understand the complexity of all those squiggly lines. No I had to wait for the more elevated mind of a young, rugby playing lad to read it and interpret it in a much more sensible way than I ever could. They are the keepers of the knowledge, after all, doncha know.

I went to see my psychologist last week and was told the EEG was abnormal. It wasn't enough to be epileptic, apparently, but it was enough to show something. What that is and what it means for my treatment or dx I will find out - I hope - tomorrow when I go for my scheduled neurology appointment. Again no one could tell me what exactly it was because it's far too sacred.

I'm feeling ridiculously agitated about this visit tomorrow. I'm actually a bit grouchy about having to go at all.

I hate having FND dx. It is boring, tedious and not at all useful to me. It helps me not a jot, just loads more stress and drains my depleted energy stores with constant exhausting day trips.

I have to admit to entertaining the dx when I am engaged with it in appointments. It's just plain easier to let them have the reins. I keep hoping one day I might display something that demonstrates a symptom that diverges from the known ones. But FND is so all- inclusive it can't be disproven by any symptom. It's sticky. LIke an old licked toffee apple you picked off the ground because it still looked yummy then realised it isn't an appropriate thing to be seen holding, but now you can't get rid of it cos it's all over you.

I have become troubled from what I have read on this site - intelligent and thought provoking insights from the perspective of those ME/CFS people who have gone before and KNOW about what one must do to gird one's loins against psychobabble. I am upset by the overwhelming volume of these medico voices joined as one in smug satisfaction that they know the truth but are condescending to allow me my little dalliance with thinking I know I'm not hysterical - it's all part of being hysterical. I am challenged by the passion and courage of the people posting and I am ashamed of my passivity towards my dx. My futile dance is starting to become repugnant to me. The music sucks, the perfume stinks. The steps are all wrong. I'm starting to feel like a fraud unto myself (or is it a Freud unto myself). Either way, I am not maintaining any level of integrity by pretending to be okay with it.

However, i have told myself that should my abnormal EEG be passed off as just another weird symptom, I shall dump the lot of them. I may be bowing out of the next sticky dance...

Comments

Thanks for the blog - indeed you are in the shit if people with M.E/CFS feel sorry for you as we tend to be at the bottom of the pile. I am intere3sted to know more about your symptoms. I have M.E, probabaly as a result of undiagnosed late stage neurological Lyme, Bartonella and Chlamydia pneumonia infections (chronic). I have also developed mast cell activation syndrome - quite common in people with Lyme/M.E who have been ill for a long time without treatment hwo then try to treat. We cant be sure, but I appeared to have a seizure two weeks ago, which may have been a drug reaction (to an inhaled steroid so not something normal). I noted that my mouth also went down on one side so that I couldn't speak properly - my arms and legs flung out repeatedly as they often do, but not over and over again. This went on for thirty minutes - I wasn't unconscious but couldn't have got up. Afterwards I was really confused and vague. this carried on for a couple of days. Due to the M.E diagnosis I don't even get to see a neurologist - my GP said it wasn't necessary for my 'tics'. My head was also shaking during the seizure. I get told all the time that abnormal results are 'nothing'. My elevated ESR - nothing to worry about. My positive Antinuclear Antibody ' not worrying at low levels - lots of healthy people have this' er hello - im very sick - house/wheelchair/bed bound often. My IGM has been high (immunoglobulin levels) for about a year - 'we aren't concerned about IGM levels', my ferritin is low despite years of supplementing iron 'its probably just your periods' I have a positive test for chlamydia pneumonia and lung issues 'everyones been exposed to that', I have a lymph node on the back of my neck that has been hard for about 6 years - went down after a course of steroids but since back up 'we aren't worried about those lymph nodes'.
 
Thanks everyone for liking my first ever blog attempt. Much appreciated.

Gingergrrl, read the next entry to see just how 'well' it goes. haha. :0
 
Hi justy.

Probably my most obvious symptom is severe exertion intolerance. However, this is not recognised in the diagnosis. My movement is described as 'atypical', which means, to them, that it is psychogenic.

I get seizure like symptoms, fatigue, metallic taste, eye movement problems, slurred speech, dizziness and migraines. The only thing they concentrate on is the walking. All else is ignored.

I had an ANA score of 1:640 and been told it's nothing. Like you, 'lots of people have naturally occurring ANA". It's very frustrating that no one seems to care about these every day difficulties that you have.

Sounds like you have a lot of things making other things worse; sort of piecemeal, shrapnel in the system if you will. And isn't this typical of those with ME and MCAS? I really feel for you.

(ran out of space...TBC)
 
#2 from prev post...

I am a microbiology / immunology scientist, not a medico. I am interested in how cells work and interact. A millimetre or a microgram is huge in my world. I can only tell you this from my perspective. Lumps of any description irritate the system. The immune system has a hard time with them and is constantly trying to get rid of them. This causes all sorts of flow on effects that continually alert the immune cells to further action. Inflammation is a typical reaction and inflammation causes a person to feel unwell because the immune cells are in a state of hyperactivity so they are releasing all sorts of toxic chemicals that make things happen, but that also make you sick. Mast cells are bastards for this. All granulated immune cells mediate allergic reactions so anything irritating like a lump moving against other structures is going to bother them and set up a constant overreaction. But that's just my observation and I am not a medico so I can't say 'get that lump out'. Doesn’t sound like it would be helping the MCAS any.

People with MCAS have malabsorption problems, don’t they? Perhaps this explains the persistent problems with low iron.

Chlamidia pneumoniae, or Chlamidophila pneumoniae causes atypical pneumonia in humans. I think it's a bit of a blow off to say 'everyone' has been exposed, well, yeah people are often exposed but their immune systems usually take care of the problem. Chlamydia is a weird little chap and it operates quite differently to usual bacteria. It's more often seen in people with compromised immunity. If you get this and other weird things that normally wouldn't be a problem like certain parasites like amoebae or fungal infections as well, that is when medicos start to take more notice. Its presence can also cause immune responses like asthma.
 

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