Sunday, August 23, 2015

Here's looking at you ...

These are my notes, and my thoughts upon the various tests that I undergo in an attempt to diagnose my symptoms. I have significant "movement disorder" involving cerebral ataxia, peripheral neuropathy, and bilateral vestibulaphy. I write these notes in an attempt to keep track of the symptoms and their significance. I do not write these notes to evoke sympathy; I need knowledge, rather than sympathy. In and of myself, I am doing okay. I would like my symptoms to be all rolled into something approximating a diagnosis. I do not expect a "cure", nor do I expect a treatment regime. I do half-expect a diagnosis of dementia at sometime in the next 5 years, however. Hence, I am pushing myself through the excellent on-line course devised by the Wicking Centre at the University of Tasmania. Half-expect should more truthfully be three-quarter expect. So, no coo-ing soothing words, please. But if you have any friends/rellies with similar impacts, I would be delighted if you were to comment.

On Friday 7 August, I yet again traipsed over to Royal North Shore Hospital (RNSH) this time for a "Nerve Conduction Study" and some video-ing (three vowels together was too much to cope with, hence the random dash). This was at the behest of Dr Con Yiannakis who is a neurologist from Concord Hospital who specialises in Movement Disorders. The neurologist I saw on 24th July was Dr John Parratt, who specialises in Multiple Scerosis, which is a specific movement disorder. I do not have MS, nor Parkinson's (PD), but I do have some of the symptoms of each.
Amy, the technician, and I had a long chat about the category called "technician", and where it fitted into the medical spectrum. Then, she set to work collecting the information to present to the Movement Disorders conference. The patient prior to me screamed each time the current hit, so Amy was assiduous in warning me, which was self-defeating, as my protective instincts kicked in and deflected a portion of the charge producing a dud reading. I told her I wasn't a screamer (Duh!), and she should just flick the switch without warning me, which she did and the recording went off like clockwork. They are looking for any missing evoked potentials, ie nerves that do not react to an electrical charge. In my case, they were studying Sensory Evoked Potential of specific peripheral nerves in both feet, and my right hand. The nerves in my right leg that no longer have the power to conduct sensory impulses are: the Median, the Ulnar, and the Sural. These sensory nerves gave no response, whereas the motor nerves (Median, Ulnar, and Peroneal) returned a velocity within the normal band (40/60 m/sec). I have had a Nerve Conduction test with each neurologist I have seen at clinic.
Dr Yiannakis returned, and was happy with the data recorded. He then proceded to test my reactions and my eyes. I had to touch the tip of his finger as it describes an arc in front of me - arm's length. This is done for both hands, One side is usually more inpaired than the other. In my case, it is the right-side. Touch his finger, touch my nose. I cannot always touch them first-time, and it might take a second to find either his finger, or my own nose. This time my right hand developed a decent case of the tremors, which threw me a bit. I have been noticing body and head tremors, not at rest but under motor stress. This just leads to more stress, until I stop trying and rest instead. This activity was video-ed.
The next activity was checking the tracking of my eyes. I have a lot of double-vision, a lot of eye-ache (caused by "bloating" ?), and nystagmus. The nystagmus was particularly noticeable in the extreme right of my right eye this time. Disconcertingly so. Increasingly, I am inclined to look down at the immediate path beneath my feet. I find I am only comfortable looking up at the way ahead, if I stop all forward progression. I must get my eyes tested again, not having done so since 2007! I broke my round, tortoiseshell glasses. Well, not really broke them: they simply came apart in my hands. However, eye tests are not a good test of how well I see, as they make you rest your chin on a bar, and blinker both sides. This stops all movement of the head which is what causes much of my sight problems. But there is a degree of eye-age over time ...

I have mentioned before, that one of my defining characteristics is a cough, sometimes hacking. Often caused by stress, even stress when I sit down at the table to eat. There are now two other symptoms that accompany this cough:
  • An aching pain that envelops the small of my back, to the extent that I feel sure it is going to crack. It is not a shooting pain that flashes, but an ache that envelops. I am increasinly holding the small of my back when coughing and when arising from a sitting position.

  • An excess of saliva that drools out of the right-hand corner of my mouth. Perhaps the excess saliva is always there and when I cough, I lack the ability to keep it inside my mouth.
One final thought for this long post. I am seeing a range of doctors/neurologists. Yet they all seem to have similar office-assistants. Officious. They ring me with one option for an appointment. They bully me by saying they have created the time specially for me, and otherwise the wait would be extensive - 6 months even. They bully me by saying he (invariably a he doctor) only does a specific day at my nearest clinic. The assumption is that I will drop everything and meekly turn up at the date/time offered. This is most annoying! I provide child-care for my grand-daughters. I will NOT drop everything, and rush to the clinic, especially when I know it is primarily to facilitate a conference presentation, or a journal paper.

Now to try to find some innocuous photographs, to break up the wads of text. How about some images of the girls over the last two months?


Joan Elizabeth said...

Hubby has diabetes which is common enough but all the stuff involved is complicated enough. Having something not understood would be much more complicated.

Julie said...

Type 1 or Type 2, Joan? Diabetes has a significant component of peripheral neuropathy.

Joan Elizabeth said...

Type 2. He has been diabetic for maybe 15 years and it is pretty well controlled. I had to look up what peripheral neuropathy is and see it is the thing with diabetics that makes them loose sensation in their feet for example. At our first diabetes training session there was a man there who didn't know he had diabetes until he burnt his feet very badly. Hubby has been religious about always wearing shoes ever since and gets them checked regularly to see if the circulation is OK.

The main thing affected so far is his eyesight. He has macular degeneration which has required him to get $1000 injections in his eyes on numerous occasions. I am not sure which makes my eyes water most, the thought needles in the eye or the cost. Affordable now but will be less so when we retire. But sight is a very precious thing.

The degeneration was apparently caused by one of his medications (since changed obviously). One of the needles led to a cataract which had be operated on. Our bodies are a rather complex mix of cause and effect.

Julie said...

Feet: I pay strict attention to my feet. I find it difficult to walk without my feet encased: difficult to know where they are. I wear sensible enclosed shoes, with NO heel. Where possible I wear socks to keep them a little bit warm. Even in summer I wear hiking socks to bed, otherwise they are blocks of ice. Lately, however, (increasingly but not constantly), I have red, stinging feet, from my little toe for three toes. Both feet. I will photograph this tomorrow, to show you (lucky you!). My GP had no idea what this was and gave me Diprosone. How does Ian get his circulation checked? Podiatrist?

Eyes:$1,000 injections. Gulp! Is this the botulism injection that my neurologist harps on about? Does it ease the pain for 3 months, and then anotheree is required?

What Ian has endured is why I resist some of the treatments offered.

Joan Elizabeth said...

Feet - Podiatrist checks his feet. Ian used to have cold feet but these days has cold cold hands. Really really cold. He loves the heated steering wheel in our Jeep. I'm rather fond of the heated seats. Neither of these were on our wish list just in the particular model we bought. The GPs have no suggestions regarding the cold hands, other than there seems to be nothing bad wrong with them. Our solution is try to get north to a warm place in the winter but that was not to be so other than our recent short trip this year.

Eyes - a steroid injection which gave him the cataract. He has been getting a different (cheaper) injection in his other eye lately. He doesn't have pain in his eyes … just blind spots.

Julie said...

Does being in a warmer clime get his feet warmer? I think it is poor circulation that makes them cold. On occasion, all my girls can recoil at the lack of warmth in my hands. This arvo, I was playing lego with Alannah and Juliet. Lego, not Duplo. It is such a challenge, the pieces being so small. I see it as akin to soduko! At the end of the 90 minute session (!!), I showed both my hands to Kirsten. They were blue!

Joan Elizabeth said...

Yes warmer weather makes a difference.