Health update – neurologist report

It feels strange to post an update when there’s really nothing to update, but here I go! Some time last year I consulted a neurologist to determine if there was any known underlying neurological cause for my worsening symptoms. I’m sure those of you reading with chronic illnesses will understand that seeing a new specialist is not something you take lightly – the entire process consumes so many spoons that sometimes you have to trade off whether it will leave you better or worse off, health-wise.

I was lucky enough to find a neurologist who was not only the top of his field but who was passionate enough about rural health access he agreed to do a telehealth consult from home.* Despite some technical issues, the appointment went well enough – we were on the same page in terms of testing for possible neurological conditions that are well enough understood to be identified and treated.

Big MRI
Source. The photographer wrote, “one of my kids said that sliding inside one of these things is like being inside a drawer in a file cabinet.” They’re not wrong.

Of course, then I had my crash, time sped by in a haze of illness and I suddenly found myself a week away from my follow-up appointment having completed the blood tests but not the cranial MRI. With a combination of luck, willpower and a facilitative radiology clinic, I managed to complete what I thought impossible, which was have another MRI.

I’d had one a few years back, the memories of which are rather unpleasant. So I was beyond relieved to find that the MRI machine here was a newer model which was far more tolerable to be in, and much quieter. If you’ve had a cranial MRI before, you’ll understand my fear of heading in one as a person with sound sensitivities! The staff were so helpful they even managed to persuade the other hospital to release my previous MRI discs, something neither I nor my GP clinic could accomplish.

 

Unfortunately, my efforts were for naught. The tests showed nothing, and the neurologist concluded (as was his initial suspicion) that I likely do have a neurological condition which causes my symptoms, but our current understanding is too crude to define or treat it. Perhaps, he supposed, we will identify it in 20 years or so.

Disappointing, yes, but the message was delivered gently. I am always grateful to hear the words “I don’t know.” So frequently these conversations take the path of “it’s your fault”, “somatisation disorder”, “see a psychiatrist”, as an admittance of lack of their own omniscience is beyond their reach.

This does leave me in the devastating position of not knowing, and therefore not treating. If you are otherwise healthy, negative test results are a good thing. But as Gabe Moses wrote, “to someone living with unexplained, life-altering symptoms like me, a “normal” test result doesn’t mean I’m healthy. It just means no one knows why I’m not.”

 

 

On another note, this experience plus reading other spoonie accounts online of their difficulty accessing healthcare has made me realise just how grateful I am for the healthcare system we have here in Australia. While not perfectly implemented, our universal healthcare system is one of the cornerstones of our nation. I can think of no small number of family and friends who would not be here today were it not for free, accessible healthcare and an extensive welfare system (myself included).

To give an example of how entrenched universal healthcare is in Australia, nearly 80% of GP visits are “bulk billed”, meaning the government covers the whole cost of the consult and the patient pays nothing. A few years ago, the federal government announced their non-negotiable policy of a $7 GP co-payment. The idea was so unpopular it was abandoned less than a year later.

There were protests and everything. I wish I could find a better photo because some of the placards were hilarious. Source.

I consider myself particularly lucky that I had a GP and neurologist who bulk billed me, meaning the events I describe above cost me exactly nothing. Even the MRI was free. I remain convinced now more than ever that universal healthcare is a basic human right.

 

I was actually going to conclude with a update that my health had stabilised some since my last relapse in November. Of course, I then woke up to find I’d been hit by the ME/CFS train. It seems I’m still in the cycle of having a few “ok” days, when I have some strength to go out briefly or do a few jobs, and some really terrible days when I’m dragging myself around by the walls and my speech is laboured and slurred. In neither instance am I anywhere close to the capability I had prior to relapse.

I’ll let you know how I get on in the coming months. For now, hooroo! (As my grandparents would say.)

 

 

 

 

 

*Most specialists insist on doing an initial consult in person, whether that means travelling 2-4 hours one way for an appointment or waiting 6 months until they visit our town – and not everyone visits. Then follow up telehealth appointments are held at a local GP clinic, if the specialist deigns to use telehealth, that is. The sheer arrogance of clinicians who insist on a needless 9 hour round trip for a 10 minute follow-up appointment requiring no physical examination astounds me.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

35 thoughts on “Health update – neurologist report”

  1. I seem to make my Dr appointments when I feel well. But by the time the appointment comes, I’ve cycled to a relapse! People/Drs don’t understand, when you are sick………..you..are..sick!!!! You can’t get to the Dr when you are ill! You can’t stay healthy on a schedule so you can make your appointment. You don’t choose to relapse the day before or the night before. It frustrates me to no end when I have to reschedule and they get angry with me.
    And I’ve had those everything looks o.k. tests. Only to be told 10 years later when near death- (Dr saying) “I would have done this surgery on you 10 years ago!” I don’t go by them anymore either.

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    1. This is so true! I’m sure my GP believes me when I describe my symptoms, but it is so hard to understand if you’ve never seen me at my worst. I’m starting to think I should take videos of myself struggling to walk around the house to show someone, but I can’t bring myself to do it just yet.

      Oh gosh! That must have been a scary experience for you.

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      1. By that time I cried bucket loads with relief! LOL! The poor Dr ! I acted like I needed mental health help more than surgery! I was desperate! He was new to me. And he listened to me! If he retires any time soon I’ll have to follow him like a stalker! ;o) *kidding*

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    2. This is SO TRUE! I tend to make doctor’s appointments when I’m well, but then by the time they roll around, I’m sick again, have to reschedule and then the cycle starts all over again. And they really just don’t get it. My dentist (who is my lowest priority when it comes to appointments, but is still important) basically threatened to dump me as a patient last month because of this and it’s been weighing on me ever since. It’s not our fault that we’re not well, and some empathy or at the very least understanding from those in the medical profession would be nice.

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        1. I know, right?? When I started seeing them last year there was a long medical form that I had to fill out, too, so they were and are fully aware that I have a number of medical issues and am on Disability benefits because of them, and they were really, really nice about it all at first. Deciding to be jerks about it all one year later because my poor health has interfered with a few appointments is pretty shitty of them. But what can you do, right?

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  2. Thank you for sharing this information! It seems like doctors are becoming more and more less knowledgeable and it can be frustrating! I know you really want answers to what is going on with you body and we all deserve answers t. You should not have to wait 20 years to get the answers you need. I have dealt with MS for almost 18 years and doctors never have answers to my questions. I wish you lots of comfort and wellness. I am looking forward reading more of your posts. Please know you are not alone and if I can do anything for you please let me know. If you decide to check out my blog I hope you find some of my posts helpful and encouraging because that is my goal!!! Much love to you!!

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    1. Thanks for your support and kind comment! I really believe no one knows more about what we experience than ourselves, it’s us who have to live with it every day and find our own ways to adapt.

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  3. You know you must be chronically ill when a telehealth consult is equal to a spa visit! The idea of not having to get up and travel to an appointment is so appealing to me. I’m glad you had a better MRI this time around. I hate how loud and uncomfortable they are. Ugh.

    There must be something in the universe, as I’m having one of the worst flares ever right now. It’s been going on for two weeks!

    I hope you get some relief soon. I’m so glad your new neurologist said that they didn’t know what was wrong. Honesty is always better than bluster.

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    1. I don’t think I could get to any regular appointment if it wasn’t at home. So for me, it’s really the difference between accessing health care and not.

      Sorry you’ve been ill too! I’ve been wondering with local friends who seem to be unwell at the same time whether it’s the barometric pressure or humidity, but clearly not in your case! Hope you get some relief too.

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  4. Hiya, definitely grateful for our NZ health system here too, not quite as cheap as yours but I’ve still had MRIs and other scans free of charge.
    Last year I was so ill constantly, a few ok days but no good ones. After my first MRI they found demyelination and we thought I had MS. Super tired all the time, aches & lots of pain, free floating anxiety all my other tests would come back normal but I knew something wasn’t. In Oct we stopped drinking the water from our tap, turns out it has almost twice the maximum recommended level of copper for drinking water. I’ve felt so much better, it’s going to be a long road to get rid of it all from our bodies but it’s definitely going. I wanted to share just incase you might have a heavy metal problem, so many of your posts rang true to me, especially this one.
    I hope you’re feeling better, I hate those MRIs too!

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    1. Hm, this doctor did? I was looking at the Medicare benefits schedule the other day (oh the joys!) and I’m pretty sure telehealth consults were on there – perhaps it’s just a lower fee. I do understand some tests need to be done in person, but if a patient is seeing a trusted GP who has evaluated their symptoms you’d think anyone they referred to would trust their assessment.

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      1. Last time I checked (which was a while ago) phone consults were a significantly lower rate in the schedule. That’s what doctors have said to me over the years, they just don’t do it because seeing patients in person is the only way they really get paid, even if it’s a bulk bill.

        Liked by 1 person

  5. I’m glad you had a supportive team and of course the benefit of the healthcare system behind you, but I’m also sorry that it’s showed nothing because sometimes the not knowing, the inability to have answers and know what’s ‘wrong’ can be so frustrating; without this, there’s no straightforward way of treating, as you say, but don’t give up hope for answers in the future, and you know it’s not ‘all in your head’ (so to speak!) xx

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  6. |Disappointing, yes, but the message was delivered gently. I am always grateful to hear the words “I don’t know.” So frequently these conversations take the path of “it’s your fault”, “somatisation disorder”, “see a psychiatrist”, as an admittance of lack of their own omniscience is beyond their reach.|

    I’d rather hear “I don’t know” than the alternatives, that’s for sure! So much better for them to admit that they can’t figure something out, than to have them decide, in their infinite wisdom (*rolls eyes*) that if they can’t figure it out, WE must be crazy or “faking it.” Partly because of attitudes like that and the resultant horrible treatment or refusal of treatment, I now have a horrible terror of doctors and hospitals, because I’ve had too many traumatic experiences with them (including things like actually having an emergency room doctor diagnose a blood clot/DVT, but then refuse to actually treat it. I’m so incredibly lucky to have survived that, the whole experience shocks me to this day).

    “This does leave me in the devastating position of not knowing, and therefore not treating. If you are otherwise healthy, negative test results are a good thing. But as Gabe Moses wrote, “to someone living with unexplained, life-altering symptoms like me, a “normal” test result doesn’t mean I’m healthy. It just means no one knows why I’m not.” ”

    This is completely true. Knowing that something is wrong, but not knowing what it is, or what is causing it, is awful and it IS devastating. I hope you have some answers soon, sweetheart. We’re all pulling for you, I know I definitely am! Sending you so, so much love.

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    1. I’m sorry you’ve those experiences. Refusing to treat a blood clot is straight out abuse. Medical trauma is so common in people with chronic illnesses, and I wish it was talked about more. You’re not the only one who is terrified of the medical system. I don’t think anything (and I mean ANYTHING) could entice me to present to emergency and have heard this thought echoed by many others.

      It’s horrible, really, not knowing and looking to the future which is one big desert of illness without treatment. Thanks for your support ❤️

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      1. *Massive hugs* I know what you mean, and I’m so sorry you’ve had these experiences too! I’m terrified of ever going back, there’s been too many times when they haven’t treated serious medical problems properly. The thought of going gives me panic attacks and I can’t tell you how many times I’ve just started sobbing to my husband, because I’m convinced that if something life-threatening happened and I went to Emergency, they would just let me die. Nobody should have to feel like we do, everybody should be treated equally in a hospital or a doctor’s office, we should all be treated with care and respect and we deserve to have proper medical treatment. I just don’t understand what the hell is wrong with some of these doctors and nurses, etc, but I know that if they can do this to us, they are in the wrong damned profession.

        I really hope that they figure out what is going on soon. My heart really, really goes out to you. It’s so scary not knowing what’s happening to you and not being able to get it treated. I really hope the doctors are able to help find ways to make life more manageable for you at least, until they are able to find an answer. No one should have to live like this. *Hugs*

        Sorry my comments were a bit of a rant/outpouring of grief!

        Liked by 1 person

        1. No, I appreciate them. And there is something so utterly wrong with the fact that you and others have to face the possibility of dying due to a conscious withdrawal of medical care. It is disgusting.

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  7. Hi just wanted to acknowledge another thoughtful post.
    I’ve had pretty limited contact with the medical industry so far, but I recognise the lack of enthusiasm that doctors have for admitting they don’t know. Last year I saw a gastroenterologist to investigate random but debilitating stomach pains. After a couple of investigations, nothing was found. But when I asked him what could be the cause, he changed the subject.
    And I’m also grateful to live in a country that has universal health care.

    Liked by 1 person

    1. That must have been a very frustrating situation for you. I hope you got some answers. I was surprised last year to find that after decades of debilitating stomach pain, I was diagnosed with IBS and the low-FODMAP diet actually helped. What a simple answer after all that time!

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  8. Hey cous, not great news but your experience sounded so much more professional/kind than some of your other experiences!
    Somewhat relieved as I was expecting to read about you having to deal with more rude/arrogant specialists.

    Keep on writing cous 🙂
    Tim

    Liked by 1 person

  9. MRIs are rough! That knocking😳 The brain one felt like torture. My son held my foot the entire time, talking to me and asking if I was okay. We have one that just covers your head like a donut kinda but it still freaked me out. I’m glad the test didn’t reveal anything negative for you. It’s such a catch 22.

    Not only does Australia have free healthcare but they have some great CFS research going on (yay!).

    Hoping this finds you having the best day possible.🌸😊

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    1. Yep, they’re not pleasant for anyone but for people as ill as us….horrible. I wish you could benefit from more accessible healthcare, I really do. We shall see what the research brings but I have more hope for the research in the US right now!

      Liked by 1 person

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