Iechyd Da: Part 3

So Thursday I had the appointment with the neurology specialist, following the referral from the doctor 5-6 weeks ago.

I was looking forward to this, yet nervous at the same time. Worried its something serious, but wanting to at least know the score, as the fear of the unknown is often worse. Work has been manic which is good, because it meant the Thursday came around quickly this week, and on the day the appointment came fast too.

Interestingly, while driving there, for first time in the day I started noticing face tingling. Great timing! I’d not been to a private hospital before, but was kinda like a giant GP surgery; less manic parking and corridors full of consultant rooms.

So what did the consultant say? Essentially – he wasn’t concerned with the symptoms I’m showing and didn’t think it was being caused by any disease. On one hand – this is a relief, on the other hand – I lack tangible explanation for what I’m going through and I am still left with questions.

To start with, he just asked me what problems I was having. In fairness, he gave me lots of time to talk through a lot of it. I just started with the range of symptoms: tingles, numbness, muscle twitches, tremors in forearms and thighs, weakness in certain positions with hands. I mentioned the lung and bladder related things, in case they were relevant too. After I finished he asked some specifics, such as if I’ve historically ever experienced a prolonged period of blindness or numbness in one specific area. He then went through some examinations, doing some eye tracking, hand eye coordination, resistance work, and some whacking of bits on my body to see reactions.

After all this, he ultimately said he did not think my symptoms are a result of any disease. It’s not that its something he would rule out completely, but he thinks its highly unlikely. He said that 30% of people he see come in with similar symptoms to me, with strange symptoms but not really in line with typical diagnosis.

When diagnosing MS, he believes it would more be more consistent with regards to the area. Whilst MS can target many areas, the fact the symptoms are there and then gone in certain areas over a matter of days is not what he’d expect. My symptoms are moving day to day, between both legs and arms, sometimes back, crotch or head. As a result, it just doesn’t match the normal symptoms he’d expect to see. MS tends to be in the same sort of area during a flare up, and will consistently affect the area for some time. Whilst it can come and go, it tends to do so in week or monthly episodes, rather that day to day.

Similarly with diagnosing nerve damage caused by diabetes, he said that it tends to start at a certain place, such as the foot, and over a long period of time will spread. The nerves don’t recover either in this type, so my symptoms do not match once again.

So this left me in a situation where he can’t see any reason to explain the symptoms I’ve been having. It’s not that he doubted I had been experiencing what I say I have, its more that the he feels they can’t be explained by a disease or a neurological condition. He’s said with problems with the nervous system, they tend to present them selves in a way where you cannot ignore them.

So why do I, and the other 30% of his client tell, experience these symptoms? Its hard to know for sure. We can can be a down to stress or hyper-focusing on symptoms. I find it easier to imagine the tingles being associated with psychological reaction and stress, but the numbness is harder to logically link to psychology. But then, my logic is based off of a non medical education. The specialist claimed that many “normal” people will have some kind of tremor if you ask them to hold out their hands in front of them, or will have certain positions where their muscles are under tension and will shake or be weaker.

With stress, well, there has been a fair amount of stress this last year. Last August we had Elysia’s diagnosis, though that felt like initial stress that reduced over time as the new “normal” set in. Work is something that does bring stress, and quite often. I have a lot of love for my studio and like being a driving force in what we do, so tend to get involved in a lot of things. I have also started covering leading on project, as our previous lead needed to support another project. Regardless of wanting to do it and enjoying it though, there’s certainly stress involved, and stress that could likely be reduced or avoided. There’s also been the stress of my other health issues, like my lower back being injured for 6 months, kidney stone, and my under-performing lung.

I wonder if maybe I’ve pent up a batch of stress from the last year and maybe now its kicking in? I don’t know how that works exactly, but I like to try at least make some sense of things, so my logical mind can try to accept it and stop thinking more about it.

I was a bit argumentative with the specialist once this was the direction of the diagnosis. In a respectful way, I kept trying to explain that there are things I physically see, like I am seeing my arm shaking, or seeing the muscles twitching in my legs. That I am doing things I used to do with no issue, which now cause my limbs to start losing sensation. Though it wasn’t really changing his perspective, which is fine – I just needed to make sure he understood the extent of all the symptoms I’d explained to him – and still held the same standpoint.

He gave a few examples to try help me think about it too. He said if he’s ever heat-up or angry, that he can physically shake as a result of it. He may stammer and struggle to articulate his words when under a lot of pressure or strain. These are both good examples, of physical reaction to your emotional state (pressure).

From a hyper focusing on symptoms perspective, he said that if you try hard enough, you can listen to your heart beating. Its not something we hear moment to moment, but if you really focus on it, or latch on to it once you notice it unexpectedly, that you may hear it beating very intensely in your ears, or some even physically in their chest. The heart isn’t beating any harder, perhaps a bit of panic sets in, but the volume and physical beat of the heart have not changed enough to match the way you are now perceiving them.

As mentioned, he says it doesn’t rule out MS. He did say there’s some tests they can do for it, mentioning they can do a scan of head/top of spine – this would show up white areas on the nerves if they have some form of lesions and indicate MS. If the scan comes up clean, he said the chances of me having MS would be extremely low. He said he could arrange that if it would give some more peace of mind, and I used his stress diagnosis here to argue that it would likely reduce my stress about symptoms if I had a scan that indicated its unlikely MS. So we’ve got that booked in, should be within the next two weeks.

I asked in terms of monitoring how my symptoms progress, what should I keep an eye out for to know if it gets worse so I know to speak to a professional about it again. His answer was to stop monitoring it daily as I’ve been doing, as that’s probably contributing to it.

So I felt I was in a position where I had two real choices.

1. Believe his diagnosis and trust that there’s nothing wrong and just ignore the symptoms
2. Don’t trust in the diagnosis and seek a second opinion.

My logical brain was shouting for option 2, but I’ve really been pushing myself to option 1. I can’t be so naive to think I know better than a professional, at least not without first trying to accept the diagnosis and see if a change of outlook and managing stress can help make things better.

The way I helped convince myself that option 1 was what I was going to do was the following: If he is right, and I choose to doubt him and remain convinced there’s something wrong with me – I am only going to make my symptoms worse and won’t ever get an answer that’s going to satisfy me. If I was to instead to trust in the diagnosis, I can at least try and see how things go. At the end of it, we’ll be able to say at least I’ve tried, and that can feed into the info I provide during any potential second opinion in the future. If my symptoms get worse, or they start affecting my physical strength or dexterity significantly, then I can still react and go back to the doctor.

So I am now thinking of what I can do to try work with option 1. First off, I need to stop hyper-focusing on symptoms when they occur. I need to not assume they are abnormal, and instead just dismiss them as normal, do my best to shake them off and not focus on them. I need to stop recording a log of my daily symptoms, and stop building up evidence that supports the argument that this is all caused by some condition.

Secondly, I am going to try and think about ways to reduce stress in my life. I went to bed Thursday night thinking “This weekend, I’ll think about ways to make life less stressful, and make sure tomorrow is low stress”. 2 hours into my workday, and there I was rushing to grab something to eat minute before a meeting – telling Elysia I have no time to chat I just need to eat as I still haven’t had breakfast. Oops, what happened to no stress? The chain meetings, the problems that were arising around a deadline, and the lack of routine in the morning to ensure I ate (as we had to take Elysia to a visa appointment) meant that by midday I’d already started a stressful day. The nature of the day meant it ended up getting worse too, it ended up being a very stressful day for me from a work perspective.

So I need to think about stress management seriously. There are simple things in my out-of-work life I can go back to, which would help. Things like routines to wake up early, give myself time to do nothing, planning and preparing meals. I also will try go through my health insurance to talk to a psychiatrist or someone to get help with managing stress and talk to about stuff. Then, I need to think about reducing the stress at work. That’s something I plan to talk to some of the people about me about, its a mix of me taking on more than I should be – but also the nature of the work recently means there can be a sense of constant pressure, where every time you hit a finish line – a new one springs up just behind it.

So for now, this is where we try to draw a line and move forward more positively.