Living with an Undiagnosed Illness

Most of us believe that if we get sick, we can see a doctor, and they will find out what is wrong and start us on our path towards recovery.

But what if your doctor doesn’t know what is wrong or how to treat it? This is the story of many people worldwide, and yet it is rarely talked about.

The medical community undoubtedly wants to keep these stories out of the limelight, for risk of losing the public’s trust. But the truth is that there are several reasons why a person may miss out on a diagnosis, and it is rarely the fault of the doctor; however, there may be times when doctors can improve their approach. 

Here are a few scenarios:

The Invisible Illness
The patient’s symptoms are vague and self-reported. The GP either assumes a common illness fitting those symptoms, or the basic tests they perform all come back normal, and the doctor suggests the patient comes back if they get worse or the symptoms don’t clear up.

Persistent patients, or those whose symptoms are debilitating, will likely persevere with their doctor and push for further testing and to see specialists. This may eventually lead to a diagnosis, but even then, it may take months or years if symptoms are not backed up by abnormal test results. Others with milder symptoms may just learn to live with them.

Doctors may become suspicious of hypochondria, and suggest that the patient also takes steps to help them deal with the symptoms psychologically. This is not necessarily a bad thing if it helps the patient accept the situation, as long as it is not assumed that it is solely a psychological issue.

The Oddity
This patient presents with a variety of symptoms. One of them is apparent to doctors (either directly visible or easily determined), but further testing doesn’t explain why it is there.

Doctors may initially appear very interested in these cases and want to find the cause. But they may quickly lose interest/concern when results come back normal and, unless the illness becomes life-threatening or increases in severity, the patient may eventually be discharged from care without a diagnosis.

Symptoms may be treated directly, but doctors may (understandably) be reluctant to treat an unknown disease, in case more harm is done than good.

The Overly-Trusting
We should all have faith that our doctors are trying to help us the best they can. But, they are only human.

If your symptom description leaves something to be desired, or you feel the doctor has missed something, it is your responsibility to speak up or seek a second opinion. Doctors can only work with the information they are given, and what seems irrelevant to you, may be the final piece of the jigsaw to your doctor.

This type of patient describes their symptoms to the doctor, and the doctor assumes a minor or common illness, telling the patient the symptoms will likely resolve on their own, but advising him/her to return if they do not.

This overly-trusting patient will accept the doctor’s diagnosis, and will feel too silly to return if the symptoms don’t resolve. It is a minor ailment, after all.
DON’T DO THIS. DOCTORS ASSUME YOU’RE BETTER IF YOU DON’T RETURN. THEY WANT TO HELP YOU. GO BACK TO THEM.

My Story
I had experienced a variety of strange symptoms, some of which I had seen a doctor about, and some which I hadn’t. I had been given a couple of possible diagnoses (asthma, migraine, viral ear infection…) over the years, but didn’t feel that any of them were correct. Each symptom either resolved on its own, or didn’t increase in severity, up to that point. Other than the ‘asthma’ attack (which didn’t involve any wheezing or coughing and felt more like my diaphragm was temporarily paralysed), none had been life-threatening or particularly serious.

Then, things came to a sudden head four years ago when I was twenty-four. My left little finger became numb, and over a couple of weeks, the numbness travelled up my arm, and eventually spread to the other arm, my left leg, my back, and my face. During this time my scariest and permanent symptom also arrived: Paracentral blind patches in both eyes.

I had seen my GP when the numbness was restricted to my left arm, and told it was likely caused by a trapped nerve. But it takes a while to get an appointment, and so I wasn’t able to see anyone as it continued to spread.

The arrival of the blind spots was possibly the scariest day of my life, eased only by the delusion that they would probably be temporary. At the same time, they were a symptom that would be ‘visible’ to doctors on a visual field test, so I felt reassured that it wouldn’t be long before I would get a diagnosis and begin an appropriate treatment.

The opthalmologist carefully examined my eyes, but didn’t offer an explanation.
“Your eyes look fine,” he stated, which eased his concerns of a detached retina, but didn’t do much to help me.

Over the next few months, I had a variety of tests, including blood tests, MRI/MRV (without contrast), Fluorescein Angiography, Visual Evoked Potential, EKG, and several visual field tests and eye exams. Needless to say the results were all normal. A slight abnormality was picked up on the EKG, but it didn’t appear to worry anyone, despite episodes of tachycardia in the past.

Overall I was very impressed by the examinations that the NHS offered me, and my only dissatisfaction involved human error (including my own lack of persistence – worry is exhausting), and ‘The System’. Inevitably there was a waiting list that meant procedures were performed when my mystery illness was no longer in its acute stage, i.e. the numbness had subsided, and the eye symptoms had presumably become residual damage rather than the inflammation or trauma they had started out as.

Eventually my investigations turned into periodic monitoring, and ultimately to discharge from care. It had been a trying year, and whilst I failed to mention to doctors that the reason they had thought that my vision had improved somewhat during this time was because during the ‘monitoring’ stage I had received broad-range field tests rather than the central one that had led to the discovery of my blind spots (I’m not perfect and it’s hard to remain persistent, which involves arguing with doctors), I had only one recurrence of numbness, which was restricted to one thigh, and resolved much faster than the previous episode. I hoped this was over, but still worried about my missing vision and desperately hoped it would one day return, or at least remain stable.

What we can Learn
As humans, we need to be aware that some struggles are invisible to others, and to remain compassionate and accepting towards one another, and accept what they tell you without judgement.

As employers, you need to be understanding of the need for medical appointments, and know that a healthy and cared-for employee is a more productive and loyal one. We also need to remember that people with disabilities are not redundant, and may prove to be your best employees if accommodations can be made.

As doctors, you need to listen to what patients are saying. They know their own bodies better than what a test result can tell you, and there is still much that is unknown in the medical world. As one doctor once told me, “Medicine doesn’t have all the answers”. Don’t dismiss a patient as ‘depressed’ when they appear upset; listen to why they are upset. Could you live with all of the symptoms they are describing? Sometimes it is better to admit that you don’t have the answer, rather than condemn a person to a psychological diagnosis. Perhaps their anxiety is situational, rather than chronic.

As patients, we must listen to our instincts, and learn to take responsibility for our own healthcare. Doctors make mistakes; this does not mean they are negligent or incompetent, but they are only human. If you’re not satisfied, seek a second opinion, or persist with your current doctor. Write down your symptoms on a timeline so that you don’t forget anything, and can tell your story coherently and peristently. You will probably be anxious on the day.

Ultimately, put your health first. Always. You never know when it may be taken from you, and you need to be prepared to fight your case.

Medically Unexplained Vision Loss: A Self-Reported Analysis

Summary of symptoms (from most to least distressing)
– Permanent bilateral stationary blind patches in vision
– Episodes of skin numbness lasting for up to 21 days
– Light-headedness; ranging from mild to collapse
– Generalised anxiety and OCD symptoms
– Visual Snow: Constant static-like visual disturbance, accompanied by mild palinopsia, BFEP, and night-blindness
– Symptoms of low blood pressure: Readings taken by medical professionals and self ranging from 94/56 to normal, frequent visual fading upon standing, weakness (particularly before eating)
– Severe headaches, approx. every 2 months (least distressing as largely treatable with multiple painkillers, but leaves me feeling groggy and heavy-headed)

Timeline of Symptoms
– Anxiety/OCD (always)
– Headaches (c.2003-Present)
– Visual Snow (2005-Present)
– Light-headedness (2010-Present, no longer severe)
– Numbness (2012-2013)
– Scotoma (2012-Present)
– Low BP (2012-Present, to best of knowledge)

Medical Visits and Tests
GP visit re: Light-headedness (2010). No further investigation.
GP visit re: Light-headedness (2011). Tachycardia observed and issued with 24-hour heart monitor. Some slight abnormalities observed but no further investigation.
GP visit re: Arm numbness (May 2012). Reassured of likelihood of trapped nerve. No further investigation.
GP visit re: Persistent and spreading numbness (April 2012). Placed on neurologist waiting list.
GP visit re: Scotoma (June 2012). Sent to Eye Hospital for examination. Broad-range field test (normal), central field test (several missing patches observed). Eye examination (normal). Told to wait for neurology appointment.
Admitted to hospital following leg weakness and reduced sensation in leg and foot (July 2012). BP (low), MRI/MRV (normal), spinal fluid pressure (normal), blood content (normal), eye exam (normal). Fever following lumbar puncture lasting 24 hours. Discharged the following day with scheduled Visual Evoked Potential and Fluorescein Angiography.
Visual Evoked Potential (September 2012). Normal.
Fluorescein Angiography (October 2012). Some abormality at side in both eyes but informed that this would not cause the symptoms described.
Follow-up appointments (2012-2013). No observed progression of symptoms so discharged from care.
GP visit re: Anxiety (2014). Prescribed Sertraline. Significant improvement in mental state but no improvement in previously-described symptoms.

Today’s Beef: The Behaviour of Animal Lovers on Forums and Facebook Groups

I’m one of the world’s biggest animal welfare advocates (not to blow my own trumpet… 😛 ) and also volunteer at my local *amazing* rescue centre, but it does irritate me when people ask an innocent question on a forum or Facebook group and are met with responses basically amounting to “You’re cruel!”, “You’re an idiot!” or “You don’t deserve to have pets!”

I’m sure there are many many people out there that ARE cruel, but these generally aren’t the people posting about their pets on message boards or asking for advice.

An example of this is when someone posted a picture of their chihuahua having had its hair cut around the belly and sides. This was cut for the summer to keep the dog cool, but the post was quickly inundated with comments such as “That’s cruel!”, “It won’t grow back the same!” and “The hair protects from the sun and prevents ticks! It’s not supposed to be cut!”

These type of comments, in my humble opinion, are misinformed and prejudgemental.

I am a human. I not only cut my hair short on a regular basis but also shave my legs and underarms. No, Mother Nature did not intend me to do this! But I still manage just fine, and actually it makes me feel more hygienic and is more practical for me.

If you don’t accept the human comparison, many many dog breeds have short hair and manage just fine. So why is it so wrong to cut the hair of another breed?

The mind boggles. Please feel free to educate me on this topic in the comments, as I am open-minded and willing to admit if I make a mistake.

Please also feel free to comment about your own experiences of this type of behaviour on pet forums and the like. 🙂

Pansexuals Vs. Asexuals: A Response

This is a response to the video linked below, which compares pansexuality with asexuality. This is why I think the video portrays both of these sexualities in a negative light.

I’m fine with oversimplification, but this flat out makes both sides look bad.
Pansexuality doesn’t mean that the person wants a lot of sex, it just means the person can theoretically be attracted to anyone of any gender (or lack of gender). So that in itself means pansexuals and asexuals can’t be directly compared.
Asexuality is concerned only with sex itself; not with the gender of the person the asexual may want to date.

And yes, asexuals can date. Asexuality is a spectrum. On one end of the spectrum is demisexuality. Demisexuals can experience a desire for sex, and can enjoy sex, with the right person. It’s just that their feelings of emotional and sexual intimacy are more intertwined than the average person. Demisexuals are unlikely to experience sexual desire towards a person they don’t know; for example in porn or seeing a celebrity on TV (unless, perhaps, they have developed a ‘connection’ with the celebrity by reading about them or watching interviews, etc). They are also unlikely to feel sexual attraction towards a person they have met in real life, but don’t know anything about. (However demisexuality is, in itself, a spectrum, but I won’t go into that here.)

On the other end of the asexuality spectrum is the aromantic asexual. They don’t experience either emotional or physical feelings of attraction towards others. But, being a spectrum, most asexuals will fall somewhere in between.

I don’t claim to be an expert on this, and my knowledge is based only on what I have read about or watched on YouTube. Please feel free correct me in the comments if you think I’ve made a mistake. 🙂

US Visa Application and undiagnosed neuro symptoms?!

Ok… so it’s been a while since I posted on here… Sorry about that! I was discharged from the hospital care a while ago in terms of my VS and other neuro symptoms (all of which remain undiagnosed) and I’ve been caught up with my (hopefully) upcoming move to the US to marry my beautful fiancee ❤ Please visit our blog (http://www.katieandjen.wordpress.com for more information, or follow us @katieandjen 😀 )

Thankfully I don’t have anything new to report in terms of symptoms, but I have found myself in a new situation that has led me to post here again. Before I have my Visa interview in London, I have to attend a medical examination by the US Embassy’s designated doctors’ surgery.

The purpose of this is to assess your physical and psychological state to determine if you’re fully functional and able to work, and therefore unlikely to become a burden to US taxpayers, as well as to ensure you’re not going to bring any communicable disease with you. This is fairly straightforward; but before you attend the medical exam, you’re required to fill out a questionnaire about your health.

One of the questions is “Have you ever been investigated or treated for a serious illness?” (Wording may not be exactly the same but essentially the same meaning.)

Well, April 2012 is when my blind spots first developed. I was investigated for all sorts that year, and was also admitted into hospital for several days at one point for further testing. (I want to point out that to this day I have no idea whether or not the blind spots are related to my VS, which I developed as a teenager.)

At that time, I had no idea my future self would be applying for a US Visa, and naturally a diagnosis was at the forefront of my mind. However, it now leaves me trying to explain a fat wodge of medical notes (well actually a lack of them, as it is too expensive to get them all printed!) that do not lead to a diagnosis. It is great, of course, that the doctors dug as deep as they reasonably could into my health and didn’t find anything serious; however they did, at the time, find scotoma in my vision, which was never explained.

This leaves me with the only option of trying to prove that my undiagnosed symptoms will not prevent me from working in the US. As I have no diagnosis to give them an estimate of my future health, I can only get a letter from my doctor stating that I am fit and able to work, and perhaps also my employer stating that the only extended sick leave I have taken was during my stay in hospital.

I will keep you posted with how it goes and any new information that comes to light. Bye for now.