Julie-
Sending you some happy thoughts!

I have to go to my PC tomorrow for a referral to neuropsych...pretty nervous, but I am glad (honestly) that you recognized some bias on the part of the Dr. I will go into this with a more open mind now.

Hi Mark,

Logged on today for a bit, trying to "maintain"...my youngest just started Little League and Easter is upon us...
Thank you for the info...I definitely have a "fear" about getting lost, but it seems as though it would be hard to do here lol...
I'm looking forward to a nice walk, but first, I've got to get some help managing these symptoms...
Had a "bout" of nausea for days, and allergy season seems to have exacerbated my already existing headaches...
BUT...I'm still trying to maintain some sense of happiness...ya know, for everyone else lol....
STILL waiting for a hearing....I just don't understand.....
I hope you and your family have a blessed Easter...

Julie

Thank you for the happy thoughts..
Sending some right back your way with wishes for all the best as you go through the testing...

Have a blessed Easter as well...you'll be in my thoughts...

~Julie

Hi Julie,

I can so relate to you regarding the emotionality of receiving a report and wondering about whether you can ever return to your profession. Last week I received a neurologist report (10 weeks after I had the assessment done!). Prior to receiving it I promised myself I was not going to get stressed about it, but unfortunately the stress levels have increased somewhat. It is only a 2 1/2 page report and it is so inaccurate, I had to keep checking it was actually about me. I don't understand all of it and have to put my questions in writing (it's all a bit of a process!). Interestingly the neurologist did not think it was important to report that I have suffered five previous concussions, but he thought it was important to report I wear spectacles (which I do not) and have regular dental care. I am now in the process of writing what changes I would like made in the report - I have written 5 pages and the report was only 2 1/2 pages!

A sentence I found interesting in the report was as follows:
'Whilst some clinicians might describe this as post-concussion syndrome, this does not adequately serve our patients for there is no clinical criteria, no diagnostic tests and no treatment pathway nor prognosis factors, thus I do not believe Sharon has post-concussion syndrome. I suspect she has functional and dissociate neurological symptoms that account for her presentation.'

And another sentence:
'It may be helpful to set reasonable expectations and discuss the aetiology of her complaint, which I would summarise as a constitutional syndrome with components of headache and anxiety, but together these do not explain all of her symptoms.'

Fortunately I no longer suffer headaches regularly - only when I push myself and do not take rests when I should, and the anxiety I experience is only mild and related to the uncertainty of when I can return to full time employment.

So what diagnosis is it, or do they mean the same thing? Can anyone explain in plain language what functional and dissociate neurological syndrome (which the neurologist also refers to) and constitutional syndrome are?

I have a neuropsychologist report (from January 2014) stating I do have symptoms consistent with PCS and my cognitive abilities are significantly impaired by fatigue. I know I have PCS, and like so many other people with PCS seem to have to battle those people who think if we push ourselves just a little bit harder we can do a little bit more. I am working 3 hours 3 days a week. Even my GP thinks that I should significantly increase my hours because my system is just out of practice of going to work and needs to 'recondition' itself to working more hours. GP also thinks I am just lacking a bit in confidence so should just throw myself back into work. This is frustrating - if I try to work more my head feels like it is about to explode, and it takes me a few days to recover. I want to be fully functioning and working full-time (and not needing rests and sleep during the day) but my brain is not up to it at the moment - I believe I will get there and am determined to.

I think fatigue is the only symptom that is currently an issue for me-(but which impacts on my attention, memory, balance, emotions, etc...).

I am new to this forum, sorry about the rambling - just needed to get stuff out of my system.

If anyone can explain in plain language what constitutional syndrome and functional and dissociative neurological syndrome is that would be helpful.

Cheers,
Shazza:

So what is he saying? Since they cant cure PCS it doesn't exist? doesn't make sense.

Thanks for your comment. I am also wondering what the neurologist is saying. To me it sounds as though he doesn't believe in the diagnosis of PCS. It's good knowing that it isn't just me who thinks this doesn't make sense.

Cheers,
Shazza

I'd get a different opinion.

He says other doctors would call it PCS, but he seems to think that because there are no diagnostic tests, or clinical criteria etc., then he is not going to call it PCS and has decided instead to call it a functional and dissociative type syndrome.

________

Your neurologist needs to do this basic course.

Management of mild traumatic brain injury (concussion) and PCS

Thanks heaps Lara. I like your advice.

Shazza -

Where did you get this neurologist?

Definitely get a second opinion and stat.

There is such a thing as PCS. It's not your fault that every head injury is different and there isn't a clear clinical definition of what PCS actually is... you shouldn't have to be penalized because his profession can't seem to get it together. PCS has been documented for over 100 years in journals and various medical literature.

Do not allow yourself to be diagnosed with a dissociative disorder.

This neurologist seems to be taking advantage of the fact that you have some cognitive impairments that may affect how you would respond or defend yourself. It feels like he may have an insurance company's or a corporation's best interests in mind over yours and you are the patient.

Do you have an attorney? I recommend that you get an attorney stat. Allow the attorney to respond to the report.

Or allow a second neurologist to respond to the report.

How were you injured?

Thanks EshersDoll. You are right, it seems the neurologist is likely to have a corporations best interests in mind. The annoying thing is that in New Zealand there is a no fault accident policy, so a government agency called Accident Corporation Commission (ACC) is there to provide assistance to help you recover from an injury and return to work, irrespective of whether you were at fault in receiving the injury. ACC sent me off to the neurologist for an assessment. I have an advocate who has indicated that what I am going through is very common and they are very familiar with the process I will now need to go through. I understand that they need to make sure that people aren't rorting the system but it is frustrating not being believed - fortunately my employer (also a government agency) is very supportive of me and unimpressed how I am being treated.

You asked how I was injured. It wasn't a major knock to my head: the back of my son's head collided with my left temple (thank goodness he is ok). Symptoms progressively got worse over the first month or two (that was 11 months ago). I have had either 4 or 5 previous concussions - all of which I recovered from within 3 months. So I expected that my recovery would be quick from this as the knock to my head was less than the last concussion I had.

In January I had a neuropsychological assessment which supported the diagnosis of PCS. It assessed my premorbid functioning to be between High Average and Superior and my post injury functioning to have declined to Average (which is less than what I am used to but still ok if that's where it remains). However, immediate memory was Low Average, delayed memory was Borderline and Visuospatial/Constructional skills were Borderline. Fatigue resulted in a noticeable further decline in all aspects of my functioning.

I am looking at seeking a different neurologists opinion. I just need to find a neurologist who has some expertise in concussions and believes in the diagnosis PCS.

I am amazed at how little seems to be understood about PCS. Although the Occupational Therapists I have encountered appear to be very knowledgeable about it. My experience is it seems it is the medically training professionals who struggle with it the most ('if you can't see it then it mustn't exist' type thinking). Reading other peoples comments has made me realise this seems to be consistent across the world - this is worrisome given the prevalence of PCS. But the up side is I know I am not alone.

Advice from all is greatly appreciated.