Thursday, July 28, 2011

My history

Here is a brief rundown of the past events that are now setting off alarms in my poor head.

In the mid 90's while training as a midwife I had an episode that lasted two weeks or so where I developed very slurred speech and had difficulty moving my tongue. It was investigated by physical exam and I was diagnosed with a post viral syndrome and sent on my way. Since then I frequently felt less mentally adept and sometimes quite foggy.

I started to suffer from an overactive bladder - the key in the door syndrome - when you gotta go you gotta go.  But after 5 children the pelvic floor probably wasn't the best. I recently addressed this through medication. Medication I initially suspected caused the blurred vision - it dries your mouth out so maybe it dries your eyes too.

I started to get quite achy about 7 years ago and worried that I had arthritis. A visit to a specialist left me with the diagnosis of Fibromyalgia which I have basically treated by ignoring it! I was achy, had brain fog and my hands felt tight most of the time and I am always tired.

When I was pregnant I developed Cholestasis of pregnancy and had many blood tests. One thing that showed up was the presence of Epstein Barr Virus antibodies.  I had glandular fever as a pre-teen following on from mumps and the mysterious post-viral syndrome so this is not surprising but many people with MS have higher than normal levels of the EBV antibodies.

Six years ago we moved to a new house with stairs. I slid on the stairs 3 times in quick succession - damaging my tailbone quite significantly. It became a major mission to descend the stairs and I still have to really concentrate.  Not helped by the removal of the stair rails for DIY.

I have often choked on my saliva and taken food down the wrong way. It's a transient thing but worried me enough to get a referral. Of course the day of the investigation it showed little more than a slowing/pouching at the back of my throat but nothing going into my lungs - I could have told them that without the machine! So I continue to choke and sometimes spaghetti dangles into my lungs and I cough madly and sometimes a small amount of food feels like (and I'm convinced it does) gets into the top of my lower respiratory tract and I choke and cough and feel like my lungs are seared.

I have irritable bowel syndrome though it's not been too bad for a few years - could be learned management!

I knew fibromyalgia responded well to exercise so I pushed myself to run.  I was enjoying it and getting quite a bit of zip when one day I managed to slip off the kerb (bit like stairs!). My foot felt like a knife had gone through it. This sent me off on a whole nother tangent - (ACC blaming my split perineal tendon on degeneration rather than accident because I'm so old! No payment for surgery so it's been two years and it is finally coming right due perhaps to the Steroids).

So running was pretty much out the door. But I could still walk my dog......until about 5 weeks ago when I suddenly struggled to make it up the driveway and could only hobble 300m down the road. It was a combination of weakness and pain in my right hip which has been part of my life since I was a teen.

The off-shoot of no exercise was weight gain! So I started a weights program which has helped a little but my lifting weights have dropped significantly. Where I could do 15kg per arm I'm now struggling with 5kg! I'm also too damned tired!

There have been other things which I was really not aware of until I began reading a book today and thought "Holy shit! That's me!". I 'see' sounds - I get bright flashes with loud or sharp noises.  When Simon gesticulates with his fork I feel like it is grabbing my eyes and pulling them. I can get vertigo on very small heights (anything more than 3 steps up a ladder is no go! I splash cups of tea and coffee all over the place.  I love hot baths but my legs get really tired trying to keep me from slipping under the water! After 15 minutes all the fun has gone out of it. It is also pretty hard to keep the book from falling in the bath (Can't have a bath without a book!) as my hands feel swollen and start to ache.

I can't keep my legs and arms still for more than 15 minutes - try 45 minutes in an MRI machine without going insane - I cried and would have screamed but I'm too socially constrained.

So I have a whole hodge podge of symptoms which have been investigated in isolation and never really linked.

Maybe a neurologist will pull it all together but based on my past experience I'm really not holding my breath. If I wasn't such a sceptic I'd really have little faith in medicine! I'll tell you one thing if I find out I have MS and I'd have had a better prognosis if it had been investigated more fully at the 3 crucial presentation points I will be up that postal tower pretty damn quick!

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