A Diagnosis Matters…

Being undiagnosed and having no answers for the peculiar going on inside our bodies is very much like being stuck in a darkened room with no light.

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Living without a diagnosis is very much like life in the dark

After every uneventful doctors’ appointments, and every negative test results only moves the light switch further from our grasp, and we remain, still in the dark.  You begin to fear every upcoming appointment for the worry that this meeting will end with the platitudes that you’ve heard many times before, such as “We know there is something wrong, but we just don’t know what.”  Then there is the usual carousel of different doctors from different specialities, some you may have seen before but which only yielded more questions.

In our world of living with chronic illness, the light offers answers to our predicament, in the hope of appropriate treatment and a better future.

Remaining in the dark, however, leaves us still with many unanswered questions, and living with a future of unknowns.

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Having a diagnosis means living with many unanswered questions

I read an interesting article that was written after the author was eventually diagnosed with an autoimmune condition.  In the article, she wrote that although she was thankful for finally being diagnosed, she felt however that nothing really changed with regards to her life with chronic illness.

And this is true, of course.

Getting a diagnosis; an answer to the big question that has been hanging over your head for a long time doesn’t really change anything.  The symptoms, the limitations placed upon your life and the other effects that chronic illness has on your body and your life hasn’t really changed.  Life is really the same regardless of whether or not we have a diagnosis.

But often a diagnosis matters.  Some may just say it’s only a label, but when you have been in the dark for so long, it’s more than just a label.  They provide answers.  Validation.  Proof that the doctors that were cynical in their treatment of you, those doctors that told you “it’s all in your head” were wrong, and you in your insistence that something was wrong with your own body was right.

A clinical diagnosis almost acts like a light sabre against those forces that doubted the existence of the symptoms ruling your body and life.

We need to know exactly what we are dealing with.  To have some idea of what the future holds for us instead of living with unknowns and what ifs.  A diagnosis matters.

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It can be lonely not having a confirmed diagnosis with many people questioning if you are actually ill.  Getting a diagnosis can lift a weight off your shoulders

A diagnosis can lead to answers.  It is far easier to find information when searching on Google when you have specific keywords to search, such as a diagnosis of MS for example than if searching for the many symptoms you are experiencing in the hopes of coming across the answer for yourself.

It’s also far easier to find others like you, those also battling the same disease as you; to build an online support system with those who understand, swapping tips and stories of your own experiences of living with the condition.  A diagnosis matters.

A diagnosis can lead to treatment options where there were none before.  And it’s these treatment options that can provide hope and a chance at a better quality of life.  A diagnosis as well, of course, can also help with practical matters such as helping to qualify for disability and other types of assistance.  A diagnosis matters.

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Having a clinical diagnosis can help with practical considerations such as applying for disability benefits that you might be entitled to

For me, I have been waiting for more than most for a definitive clinical diagnosis for symptoms since young childhood, some possibly since birth.  For years, I have seen so many different specialists, sometimes more than once.  Received the cliched response that the symptoms are due to depression and anxiety and sent on my way with a prescription for medications to treat such ailments but still with no improvement.  Years with no name or explanation for what I was experiencing.  Years of disappointment and hopelessness after test after test came back normal.

Last year I was referred to see a specialist neurological consultant in London and which I attended last month.  I admit I went to the appointment with not much expectation, after many years of disappointment I have learnt the hard way not to get your hopes up as they will inevitably be dashed with a lack of answers, leaving with no diagnosis and an uncertain future.

However, although I came away from this particular appointment with no formal clinical diagnosis, I feel that I have found a small flicker of light in the darkness of suffering.  After the consultant’s senior registrar took a thorough clinical history, gave a detailed neurological examination and poured through my hospital notes, the mystery that is my life and has so far eluded many doctors, he left the room to consult with the top neurologist at the hospital to discuss my case.

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Getting some answers means that I can finally see a glimmer of light within the dark tunnel that I have been living in

He concluded that the problems I have experienced, and are still are experiencing are due to a neurological problem of some kind but unsure of the exact cause or even a name for what I was experiencing.  Due to the problems I had shortly after birth, he concluded that it was highly likely the cause of many of my symptoms was from birth and may either be due to damage to the brain during the delivery or even a genetic condition of some description.  Could it be that whatever condition I am suffering was determined before I was even born?  That the development of the symptoms was inevitable like me having blue eyes?

Apart from the unknown neurological condition, the consultant also felt that other problems were going on, diagnosing me with a Functional Neurological Condition, which I have previously written about after a local specialist diagnosed me with FND.  Apparently, it is common for patients exhibiting functional symptoms in conjunction with other illnesses.

Alongside these, I was also diagnosed previously with a vestibular condition; a weakness of the vestibular nerves (those nerves that run from the ear to the brainstem) resulting in dizziness and vertigo.  It is not uncommon for those living with chronic illness to experience more than one condition.  Like jugglers who juggle many balls at once, our bodies often juggle many symptoms from different ailments at once.  Each symptom vying to be the centre of attention.

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Having one or more diagnoses means juggling many symptoms, all of which compete for attention

In the meantime, the consultant is going to speak to other specialists from other departments to narrow down the possible suspects that could be the cause of the as yet undiagnosed condition before doing investigations such as genetic testing.

So, although I left this most recent appointment with no definitive answers or a definite diagnosis, however, I did leave with hope.  Hope that we are one step closer to an explanation for symptoms that have been with since a baby.  Validation that although we are not sure of exactly what is wrong with my brain, I have been reassured that there is something wrong, and it’s not ‘all in my head’ (well technically it is, but you know what I mean).

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Like a light at a window, I can finally begin to see the light but am just not able to touch it yet.

I’m not at the end of the diagnosis journey, however, but I can finally begin to see the light although unable to touch it just yet.

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Diagnosis is not the end of the story…

Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder however shows no signs of structural abnormalities but is rather a problem with how the brain functions.  It is a problem with how the brain is sending or receiving messages.  If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.  As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.  And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

 

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger too having been through it several times before.  I am not sure how I feel about this, initially I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially sceptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences however I have learnt that even after getting a label, diagnosis is not the end of the story…

 

HAWMC 2013 Day 12: “When I was diagnosed I wish I knew….”

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

Getting a diagnosis for me, was bittersweet, on the one hand, I felt relieved – relieved that all the tests and hospital appointments; relief that in fact all the problems were not just “all in my head” as I was told so many times before by a number of doctors. It felt as if a huge weight had suddenly been lifted from my shoulders; all the symptoms that I had been experiencing had finally been validated by the medical community – finally I had proof. Many people hate labels, however labels can be useful – labels can bring people together and give a sense of belonging as well as the knowledge that there is a label and name for what you are experiencing.

On the other hand, however, here I was being told the diagnosis – a long-standing brain stem lesion. A condition, which as the name suggests is life-long; not curable and furthermore was told that there was nothing that could be done in terms of treatment. This, as you can imagine, is disheartening and frightening. The first thought that goes through your head is “Well, that’s my life over!” At that time, the symptoms were bad that they were leaving me unable to work, and if the condition was one in which was life-long then does that mean I’ll never be able to work? The situation I was finding myself in felt hopeless; as if I no longer had anything to look forward to.

So, if I was able to go back in time and talk to myself on the day of diagnosis, I would tell myself as bleak as things look at that moment – it does get better. I will tell myself all the wonderful achievements that I manage to achieve – completing course, starting a blog, asking to write articles for various websites, and even going to help set a group for those with illness and disabilities and becoming secretary of that group.

As I remember, at the time of the diagnosis, because of the severity of the symptoms I was unable to go out. Even now, I am unable to go out unless I was accompanied by another person, however back then the amount I spent outside of the house was very minimal as my parents worked and there was no one around to take me out. Therefore, after being diagnosed I was afraid that my life would involve staring at the same four walls everyday, stuck inside with just the dog for company. If I was able to return to the day of my diagnosis, I would be able to tell that girl sitting there that her life didn’t have to be that way – she could get help from Social Services and with the help of direct payments be able to employ a personal assistant to help her get out into the wider community and be able to do all the things that she wanted to do – be able to choose her own beauty products, shop for herself instead of relying on her parents or internet shopping, as well as going to the cinema or swimming. All of the above which I am now doing and enjoying every minute! Now I feel I do have a purpose and with a little planning am able to do all those things that I had wanted to do but felt was unable.

At the time of the diagnosis I also felt lonely – as if I was the only person going through all of what it was I was experiencing. If I could go back and speak to myself on the day of diagnosis I would surely tell myself that I will eventually find friends; friends both online and offline who although do not have the same diagnosis but nevertheless understands what it is like to live a life with illness. Would also tell my younger self that those feelings of isolation and loneliness would not last forever.

I would tell the sad, lonely girl to stay strong and positive and ensure her that positive things will eventually come into her life.

Am Taking Part in an Invisible Illness Panel!

Hello Everyone

I just wanted to let you all know that tomorrow at 12.00 p.m. EDT (4.00 p.m. GMT) I will be taking part in an Invisible Illness Panel with WEGO Health and Christine Miserandino from ‘But You Don’t Look Sick’ who is very influential within the Invisible Illness Community, the author of the wonderful and relevant ‘Spoon Theory‘ and whom coined the phrase ‘spoonies’ for all those living and dealing with invisible chronic illness.  The topic will be the Journey to Diagnosis with an Invisible Illness.

You can join in the conversation by going to the tweetchat tomorrow, where there will also be a link to the online meeting room:

http://tweetchat.com/room/haroundtable

Wish me luck!!

 

How I Got To Where I Am…

Well, thought it was important to give some more information regarding my journey of me and my condition.

I was born in 1986.  Odd thing was, that when I was first-born the doctors thought there was something wrong me then… a nurse noticed that I held my legs rigid, which apparently is something which newborn babies are not supposed to do…

The doctors sent me for a brain scan when I was 2 days old… but nothing was found.

So, in any case had a pretty normal childhood, well, apart from my intense phobia of heights.  All of the experts say that phobias are learnt, however, I never had a bad experience with heights… strange thing is when I was a baby, my Mother took me for a check-up at the doctors.  When she tried to put me on the bed that you have at doctors’ surgeries, I started to scream and instantly grabbed onto my Mum  and wouldn’t let go.  Instinctively, she put the baby mat on the floor and laid me down… and I stopped screaming!!  Seems as if I have had a problem with heights from birth.

I remember from childhood, I also had a problem with standing on anything which is even slightly high up – even those long benches you find in gymnasiums which aren’t even that high from the ground… it was like whenever I stood on one I was unable to focus properly and felt like everything was moving sideways…

Then at 8 years, old during a trip to a DIY store I had my very first dizzy spell… felt as if everything was moving and that if I hadn’t grabbed onto something I would surely fall.  Had a few attacks after that, so was sent to the doctors’ for tests… all came back normal.  Noticed that the majority of dizzy spells that were happening to me was brought on in places which had wide open spaces and especially those with high ceilings.  Even now I have major problems being in places which are very open and those which have high ceilings… the current train of though of why these type of places bother me is some a problem with perception and how the brain processes information being received from my surrounding environment.

Anyhow, as it became more frequent I became panicky and anxious when these attacks would occur – I was only 8 and hadn’t a clue what was happening to me?  And as the doctor’s couldn’t find a cause I was labelled with an ‘anxiety disorder.’

Fast forward several years, and the dizziness had become much more frequent and wasn’t able to go anywhere without the aid of another person – managed to complete a Psychology Degree but had to have support to do so, such as having a ‘Buddy System’ in place taking me from lectures and a designated place where I was picked up by someone.  As the dizziness became more frequent, I knew deep down there was something wrong other than an anxiety disorder and had to fight to get referred to a neurologist who eventually diagnosed the long-standing brain stem lesion.  And in terms of the spastic paraparesis – have always felt stiffness and weakness in legs especially during sports at school and when walking – but always thought it was normal as I hadn’t know anything different!!

Anyway, that’s all for now.  Please feel free to leave a comment below.