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June 2017

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tetsubinatu: (redblack name)
I wish you all could have seen the moon this morning. It was like an illustration from a children's picture book, hanging huge and golden against the pale morning sky. I had to be at the hospital for my MRI at 6.45am and luckily I was able admire it for the whole drive there. What a lovely start to my day.
tetsubinatu: (redblack name)
Lots of things went well today, so I'm giving the day a 'B+', despite the fact it involved a trip to the dentist and a bad drug reaction at the hospital. The kids made it onto the train in time despite oversleeping, I did gentle aquarobics at the pool, I had enough energy to walk to the train station, the new dentist is nice and I made it to both his appointment and the hospital appointment in good time despite tight timing, eldest child was able to pick me up from hospital after the drug reaction and it was his turn to cook dinner so I could nap when I got home. Lots of good things today...
tetsubinatu: (gold coin)
Of course, the first thing the doctors wanted to know was past symptoms that might have been been ignored or misinterpreted. Here's a few of the things that came up:

Apparently there's often a virus or precipitating illness in your 20s. Most people are diagnosed with MS in their 20s or soon after.

In 1988 I was working and living in the central square mile of Adelaide, literally 5-10mins walk apart. One day I became exhausted at work and it took me over an hour to get home, moving a few metres from resting on a bus seat to a guard rail or tree guard at a time. I ended up at home for a couple of weeks. I actually made a complicated furniture cover while I was home, sewing in 5min increments, then lying down for 20mins. It was frustrating, but then it was over and my life went back to normal. Could that have started this off? I guess we'll never know.

I've never dealt well with heat. On hot days, I'm down for the count. This may be related, but I'm very fairskinned and when I heat up during exercise or in a hot shower I turn bright red, so maybe not. Right now I'm menopausal, so I've been living in cami tops with trousers and sandals for a couple of years now, adding a shawl or light cardigan if I do actually get cold at any point.

I fatigue easily. I've been saying I'm a 'low energy' person for years. Going off gluten really helped, but I still don't have the energy that most healthy people seem to have. I suspect that being a SAHM with the ability to regulate my own activities and take downtime at whim has really contributed to enabling me to avoid this diagnosis more than anything else.

I lost nerve sensation down one arm a good few years ago which was attributed to a pinched nerve. There were no scans although they did check my heart thoroughly, since it was the left arm, and I had physio which did not seem to help. The nerve damage from that seems to be permanent, but it's just a slight clumsiness and loss of sensation in a few fingers. Threading needles is trickier than it used to be. This was almost certainly an undiagnosed episode.

I had a week of double vision a few years later, followed by the odd day here and there where it came back. I just thought I was tired and/or had a virus. Luckly, that was a quiet week when the kids were old enough to walk to school. If I'd been needing to drive around and trying to work I'd have to have seen a doctor. This was unequivocally a previous undiagnosed episode.

About two years ago, my libido died. I've always had a strong libido so this was somewhat shocking, but I thought it was connected to menopause. It contributed to my marital separation, which was unfortunate, but it was definitely not the only cause, just another nail in the coffin. It could be another symptom - it's hard to tell.

Apparently I'm very unusual to have made it to 51 without a previous episode serious enough to get me to a doctor and diagnosis. But I also have what seems to be a mild,'indolent' MS rather than a more aggressive version. I can only be grateful.
tetsubinatu: (gold coin)
It's lucky that there's practically no-one around here anymore to be bored by this stuff because I think I'm going to use it for a bit of an MS vent and record.

So, to sum up:

Wed 20/1/16: Came home from the dentist and noticed when wiping after using loo that there was a bit of pins&needles-type numbness that made it difficult to feel what I was doing. Thought maybe my panties got bunched wrong in the dentist chair. Ignored.

Thu 21/1/16: Daughter's 13th birthday. Busy all day but did notice on awakening that I had a streak of numbness/tingling down my left thigh. At bedtime loo visit, wiping conditions had not improved.

Fri 22/1/16: Beginning to feel concerned about continuing issues. Numbness/tingling on awaking was down to left toes. Decided it might be a pinched nerve and resolved to rest flat and see physio if not resolved by next week.

Sat 23/1/16: Realised I really should have seen doctor on Friday. Now feeling tingling/numbness on right toes and calf, and left leg is almost all like that.

Sun 24/1/16: Beginning to get scared. Tingling/numbness is moving up right leg, intensifying on left. Going to the toilet is becoming more difficult, with lack of sensation and difficulty in controlling pace and flow of evacuation. Flatulence is becoming a problem, although no 'accidents' have occurred.

I fell over while putting the bin out. I thought it was just a trip, but landed hard and flat.

Mon 25/1/16: Decided to complete urgent chores before going to drop-in doctor. Numbness/tingling intensifying in both legs. As I started driving, however, I realised that my control over my legs was not ideal, and decided my first stop should probably be Box Hill Hospital Emergency. (Good call).

As I crossed the road I stumbled, caught myself and wished I were not wearing slides which for some reason today were feeling sloppy and loose, rather than comfy. Walked carefully to Emergency, but stumbled again as I got up and moved towards the triage nurse after being called. A few minutes later, walking along a wide, flat, well-lit linoleum corridor, I went over flat and hard again. Felt like a complete idiot - but they were taking it very seriously. Not half an hour later, MS was mentioned to me for the first time.
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