Diagnosis Part One.

I’m not sure about you, but I have dreamt of this day for a long time now. The moment when the doctor sits you down, rests one hand on your leg and puts his sympathetic facial expression on and says, ‘We finally have an answer. You have…’

They have an action plan for you, maybe some medication to ease the symptoms and you are opened to a community of fellow sufferers.
In the back of my mind, I never thought this day would come. That I would rott here for the rest of my life with these symptoms, wasting money on specialists and medication and never be myself again.

Today, I received a call from one of my Gastroenterologists. I can tell you that I was not expecting a call this early, or for her to begin our conversation with ‘we finally have an answer. You have… a severe case of…’

Gastroparesis.

(Gastroparesis:
– partial stomach paralysis when digesting food.
– longterm chronic condition with no cure
– symptoms usually include: chronic nausea, loss of appetite, bloating, stomach pain, body aches, heartburn.
– Leads to rapid weight loss and malnutrition, depression, anxiety and a range of other great symptoms
– usually found in people with Diabetes, Autonomic Neuropathy, Neurological Conditions and damage to the vagus nerve)

I said nothing.
‘It’s unfortunately rare for someone your age to get this, and this severe…’
My heart sunk.
‘Young people just don’t get this out of the blue… We have spoken about it and think your body has a virus that has unfortunately caused it… It could be causing your other symptoms. The drug we prescribe for sufferers is Motilium but we have already trialled this on you and it showed no success…’
I tuned out at this point.
A rare condition – of course.
You keep coming back to this mystery ‘virus’ that nobody can seem to locate, or name.
It doesn’t explain the dizziness, or maybe it does.
There is no cure.
You have already tried the prescribed drugs for management with no success.

You have already changed your diet.
We are still stuck in limbo.

I cried – pretty hard.
She assured me that we would keep trying.
She encouraged me to speak to my Doctor tonight, and that this wasn’t an overall “bad result”. In order to properly treat it, we must find try to find the underlying cause.
I unfortunately have to wait a few weeks to see my Gastroenterologist, because he is booked out.
We wanted an answer, and now we have… half of one.
Not even half… A quarter, maybe.

The rest of the conversation was a blur.
I thought I would be happier with a name, but I’m quite the opposite.
You search for so long, you lose everything you had; all to receive a partial diagnosis of something rare that is yet to be helped/cured medically?
I don’t know what to do, I don’t know what to say.
I have so many questions.
Am I happy that it has a name?
Sad that it is rare and hard to manage (in my case)?
Relieved that I am not crazy?
Upset that they still think there is an Invisible Virus behind it?
Where do I go from here? Neurologist? New doctor? New specialist?
What treatments do I take/trial?
How do I improve?
Will I ever eat normally again?
Will I ever put on weight, or will it keep decreasing?
How do I stop the nausea, the unbearable pain?
What the hell is making me so dizzy?
How on earth did I get this?
I am twenty-two.
How should I really feel?

The uncertainty, the loneliness, the disappointment.
Today feels like the beginning,  all over again.

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35 comments

  1. Rare for someone of your age/fitness, therefore your prognosis must be more hopeful than the average older less fit person. Studies have shown that patients who make themselves knowledgeable and take control do much better than those who are passive. Anxiety will make anything like this worse. Ask your doc for a short course of Valium. Dehydration or contraction of neck muscles may cause your giddiness (look up rehydration salts)
    http://www.wikihow.com/Make-an-Oral-Rehydration-Salts-Drink-%28ORS%29
    Method 2 to make the liquid yourself.
    The body absorbs the salt which is attached to the glucose which is attached to the water in a long chain.

    I hope these small things may help in some way. God Luck. 🙂

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  2. It’s a step… I remember waiting patiently for my rheumatologist appointment after 2 months of illness and confidently telling everyone… At least I’ll know after it exactly what to do and how to tackle it… And at that appointment he changed the view of everything and sent me for more blood tests. I am still in the same position ‘diagnosis-speaking’ today but in a better place physically and emotionally from listening to and believing my body… Diet changes, rest, vitamins, lowering stress and letting it be – and writing about it – all helped. Do you feel better it’s no longer a mystery and you and your doctors can start talking the same language at least…?

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    1. Not really. I don’t know. I’m a bit numb at the moment. I’m still really dizzy, and I’m kind of sick of everyone referring to this ‘mystery virus’. It’s frustrating. I fear we will never control it all as a whole. It’s just really frustrating. I thought that the name would be accompanied by treatment xx

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      1. Yes, I understand… a name is recognizable, has a treatment and an end date; something to work towards. But you are on that path anyway, and every day you are getting closer to the end of it all. x

        Liked by 1 person

  3. I have been here and I know it’s seems so daunting looking at the whole picture, but just take it one step at a time. It’s too overwhelming to look that far into the future. Step 1: You got the name of it. Step two: I’m not a doctor, but maybe they will look into this virus or try a new medication. Just trust the process and try not to think about the future of it all that much. Life can be difficult sometimes, but you will get through this and be so much happier and healthier soon. Sending love your way! xxx

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  4. Don’t forget that even though these doctors don’t know of any other treatment, that doesn’t mean that there isn’t someone else out there working on something or maybe even having already found something. There may be other hard-to-treat cases or cases of unusually young patients, and perhaps their doctors have experimented with combinations of medications and other approaches. It is definitely good news to have a diagnosis because it allows you to ask much more specific questions and get connected to knowledgeable people.

    If you can, think about setting aside the issue of the mystery virus, at least for now. One of my children has autism. Was it genetic? Was it caused by my gestational diabetes? Was he malnourished because of the diet they put me on for gestational diabetes? There was certainly some mystery cause, like your mystery virus, but it has been much more helpful for me to think about what he needs now than to dig back into the origin of it. I bet you’ll get much more out of finding out management strategies for your condition than trying to figure out why you ended up with the condition.

    And I’m very sorry you have this condition. It sounds really hard.

    Liked by 1 person

    1. Yes, I agree. It’s just a bit hard because I know my body IS fighting something – this virus. And like they said, it has obviously caused this because people my age don’t just get something like this out of the blue. It’s a little upsetting. I wish I knew the cause so I had hope of treating this, as I fear there is something underlying here. It will be trial and error I guess but one little step forward. Thank you xx

      Liked by 1 person

  5. I’d be frustrated too if I had to deal with people who wanted to blame a mystery virus rather than just tell you what they have evidence for. With a diagnosis, you can start looking for support groups. Maybe there are people out there who suffer from what you have and know of different treatment options. You can take that information to your doctors and ask them about it.

    Remind them that doing nothing is not an option. Doing nothing is what they recommended earlier. Doing nothing wouldn’t have found a diagnosis. Doing nothing is what they tried to do.

    Your persistence has gotten results. Above all else, remember that. You have not failed.

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    1. Thank you.
      Yes, I know. It’s all a bit overwhelming. I think I do have a virus and I honestly believe it is to blame for this shit diagnosis. Like she said – someone my age doesn’t just get this. It doesn’t happen out of nowhere. I hope that if I persist some more, I will get the answers I seek. I just don’t know where to turn now. My bloodwork shows a mild infection but nobody can source it. It’s just strange. My body is playing hide and seek with me. And to top it all off, I just have this very random illness.
      But thank you for your positiveness. This is a small beginning I guess xx

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  6. Feel whatever you feel, at whatever time you feel it. No feelings are right or wrong. It sounds like a bit of shock and who wouldn’t be. I know life hits weird at times and your reaction is normal, all the mix of feelings are a normal part of processing. I hope you stay close to nurturing family and friends through this which is the best medicine of all.

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  7. I understand your frustration, but it really is a not so bad result. At least they know that there is something wrong with your body and it’s not “just in your head” or something. All the information (severity atc.) is not so great, but as people mentioned, now at least you can try to look some information online from other people, your doctor has something to work with. And they might be right with another cause of this, we don’t know everything about human body and how it works. I don’t want to sound like I’m patronizing you. I get that you are frustrated, because it still sucks and all, but now at last your actions got you some results and some direction, it’s better than knowing nothing again. Take care!

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  8. I know how you feel, you think getting a diagnosis will solve your problems but actually it just causes more. I’m so sorry that you haven’t got any good news to go along with it. Make sure you take some time to let it sink in, and really come to terms with it before you jump into any treatments, and only do things you want to do, don’t let yourself get talked into doing stuff. I hope you’re ok. x

    Liked by 1 person

    1. Thanks my dear. I’ve spent most of my day crying. I think it does need to sink in, but part of me just wants it to be healed… It was naive of me to think it would be something that could be ‘fixed’ if it took them this long to find it. I feel as though I have no strength to face a bigger battle than I expected xx thank you

      Liked by 1 person

      1. It wasn’t naive, it’s natural to think like that! You may not have the strength today, or tomorrow, but one day you will, I promise. It may take months, but that doesn’t matter! One day at time! xx

        Liked by 1 person

  9. You have suffered enough,
    It’s time that you won.

    That’s actually a line from a song.
    Remember, what doctors told you about not having a cure is a textbook answer. They won’t give you false hope. I’m sure doctors and researchers are looking for ways to cure it.

    Do you remember when it started?
    I hope you don’t mind me asking.

    I’m at least glad that they won’t stop trying and your loved ones know now.

    I think it would really be helpful to meet the other sufferers. Join if you want to.

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    1. My immunity weakened when I got my second round of Shingles last year (middle). I was off work, returned in October (childcare) but in December, my body just deteriorated and my symptoms were much worse. I know I contracted some virus, or it is post-shingles related.
      Thank you. Do you have a link to join? or is it via your page?

      Like

  10. I’m sorry you are going through this tough stage of life. Keep your head held high because you will overcome and succeed! You have a great blog. Thanks for sharing your story.

    I’m new to blogging and have a new page I just created. I hope you’ll check it out and let me know what you think.. Enjoy the day!

    Liked by 1 person

  11. I also have chronic illness i am going to be starting a 2nd blog today and that one will be chronic illness based and more personal. Will follow you once its done. Us young ones are true fighters xx hugs xx

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  12. I totally understand the frustration, but at least you gave the monster a name. I’m sure you’ll get somewhere, even if it takes time and patience. When you are out of patience, we are all here for you. Big hugs, you are not alone! ❤

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  13. Sending you support and hugs, hon. I played this song in a different key for years myself. When I was finally diagnoised as Dissociative, it didn’t provide much relief for me either. I haven’t talked yet publicly about being Dissociatively because its such a crazy disorder, but like you, I actually felt worse after the diagnosis. Years of wondering why I was crazy, what was wrong with me, and instead of a sense of relief I felt like someone had punched me in the gut. Raw despair and several years of denial followed. But eventually I learned to accept and manage my disorder. It sucks when you finally get an answer, but it’s almost worse than the mystery. :<

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    1. Thanks gorgeous. Not sure how to feel. Trying to stay positive, but to have something so rare and unheard of/hard to manage… Life seems like it has been turned upside down. I am quite upset.
      We’ll see how it all goes x

      Liked by 1 person

      1. There is no right or wrong way to feel. Whatever you are feeling, even if it’s just confusion and depression is valid. It’s okay to take a day or two and NOT try to feel positive for a change. Never feel guilt for your feelings. Just lean on others who support you and ride them out. ❤

        Like

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