Bugger the inheritance, you're going in a home!!!

My mother rang me yesterday.

That woman will wear me down,she has a rather scary health situation going on,she has to have a bladder biopsy as during another procedure they spotted a red shiny patch in there,fair enough she is afraid, I do have some sympathy you know,well I did have....
She proceeded to talk me through some mythical torture she is about to endure and for some really bizarre reason which I really don't get she then told me she is worried that she will be the exception that breaks the rule because Mary Archer had bladder cancer and was treated and survived.She then proceeded to tell me about her cousin who had never smoked or drunk but had died of throat cancer in nineteen hundred and frozen to death 1954 I didn't tell her about throat cancer and HPV  she does seem to be taking her health advice from the daily mail of all places.........
She then started to tell me she was really sorry but she had forgotten Poppy's fourth birthday(my granddaughter her great granddaughter) and was I coming to her birthday tea,it is on Sunday the 9th of October as she expects to be unwell for a few days after"my birthday on the first" so I say "oh don't forget Sam's birthday on the fifth will you",which she completely ignores,so she will forget poor Sam's birthday again this year,it is at this point that I somehow manage to disconnect the phone from the socket and it takes me two or three minutes to plug it back in thanks to a tangle of cables and my disability,when I have reconnected I have a listen to see if she is still there or if I should ring her back,she hasn't even noticed my absence and is still waffling about her birthday and I won't forget will I ? how can I bloody forget you have sicked father on me so I have had to buy an expensive original newspaper from your birth date,I am also having to supply the cake and she will yet again forget her granddaughters birthday,on top of which all through my illness and disablement over the last couple of years she has never once said"how are you" or "how are you feeling" no matter how much pain I am in or how many walking sticks etc I have had to use or even how effing terrified I have been.

Oh by the way,I appear to have a previously unseen genetic problem,I have a switched letter instead of  a G I have a T it is fairly near the dodgy sequences that cause HSP although they don't yet know what the likely outcome of this will be,so now all the kids and grandkids will need testing as no one else in the family is known to have any problems it must have been a de novo error when I was made.

Look a gratuitous picture of my gorgeous granddaughter in her party frock.

Dear Prime minister,

You have this really, really wrong.
When the milk snatcher was in power and destroyed British industry a result was huge swathes of the populace unemployed,to massage the numbers, in an attempt to keep at least some voters, everyone who had ever had a backache or earache or some simple but ongoing medical thing was put on the sick,my next door neighbour being a prime example,for 20 years too sick to work yet owns steel toecapped boots and safety visors and is still seen and reported for "visiting my friend at his unit" He has somehow and still is on the sick,yet able to build 12 foot long sheds and ride a full on motorbike unaided and go off painting and decorating peoples houses for them.
I can now only walk no more than about 50 metres if I have someone to hold onto or my grandchilds pushchair as a walking frame,I have fatigue,which doesn't mean I am sleepy it means I am asleep for 16 to 18 hours every day.
I, after just one month on the sick with a degenerative though not terminal illness,have already had the form from ATOS,I am about to have to start job hunting,the form is written so that unless you have no arms, legs or mouth you can and will work.If I don't go to meetings at the job centre or go for interviews I will then have my benefits cut off.However,there is no direct public transport to the town where the jobcentre is,even if there were I cannot walk to the village bus stop or from the bus station to the job centre in town.The cost of a taxi there and back would use over half of my weeks incomeThe government are also going to cut my housing benefit as my house is now considered underoccupied.So from my 67 quid a week I will be paying £10 a week water, £10 a week electric, dog knows what in rent  and in the winter I will have to stay in bed to keep warm as coal will be just too expensive now.My phone line will have to go I suspect as BT like to not only charge the earth they also like to charge me extra for being poor and unable to pay in advance by direct debit.Before anyone suggests it,I am not qualified for any sort of desk job,if I were it would have to be within a few feet of a loo and transport and have no stairs,I cannot move house as I have been downgrading jobs for years with odd unexplained problems and I have no savings whatsoever.Dear David Cameron and that traitor Clegg,is this what you mean when you say all in this together ? you jumped up, never entered the real world,twats.

I may be officially a crip now.

Saw neuro today as an urgent GP referral,
I have my baclofen back so less spasms and twitching,I have nothing for the fatigue yet,she has done some more blood tests to rule out a couple more things but says in her heart of hearts she thinks I have secondary progressive MS in my spine ,although she cannot officially diagnose until something shows up in MRI or LP,
I 100 per cent do not have a functional deficit/conversion disorder .
If all these blood tests come back negative we can experiment with antifatigue drugs,but it seems they only rarely work.
I will get an appointment in the post for the bladder clinic(the urgency is bothersome and worrisome),I can get an emergency appointment with her any Friday by getting GP to ring and finally I am to contact social services to see if any help is available and if I need it she will write to dole office etc describing my illness/symptoms etc.

Unwell,unemployed and moaney,

Well that did a lot of good,or rather not,all tests come back negative,no leukodystrophies,heritable spastic paraparesis or rare copper metabolism problems,no thyroid or diabetic issues and no neuro-syphilis ,in fact I am perfectly healthy except I don't function properly,it would seem according to docs that I have either an unknown neurological condition or MS that just isn't testing positive.This exciting news means that I can expect absolutely no treatment for the time being,In fact I am currently getting less relief than last week.
I went to my GP to ask again if I can have any help with my seriously debilitating fatigue,she promptly took me off the antispasmodic baclofen as 'they can cause fatigue' I explained I had suffered with fatigue on and off for several years before any other symptoms showed themselves to no avail,I am now fatigued and full of cramps,spasms and spasticity.......
Daughter has gone off to Australia for her year,various members of the family saw her off from Heathrow,Rory and his daddy found a taxi to play in whilst there

she is such a busy bee,instead of having some fun she starts an accounts job Thursday, less than a fortnight after arriving! She has sent back picture of beaches and fruit bats and cockatoos via facebook and hopefully we will be arranging a skype schedule for video calls,don't tell her I said so but I miss her nightly moany phone calls.

Her moggies are well settled now and have arranged a truce with my Lucifer cat,in fact Claude her slightly simple cat has developed a fondness for my crochet blankie in progress and Charley the big ginger and white cat has taken possession of my sheepskin rug.

Life in the strange lane.

I am still waiting for the results of my LP, MRI and what seemed like 8000 blood tests that were all done at Addenbrookes on 17th march.
I usually see a neuro at my more local hospital,so I rang there again today to see what was going on.
The neurology department haven't even bothered turning off their answerphone today!
So I took things into my own hands,I rang Addenbrookes where the tests were done,they sent the test results to my local hospital on 12th April and cannot give me the results over the phone,but the really lovely lady I spoke to is going to fax the results to my GP ,I am then seeing a doctor on Friday.........not my usual GP she is on maternity leave(I am doomed,my life is never simple)
Now you may think I am kicking up a lot of fuss,but things don't seem to move along unless I kick them :-)
The reason behind all this is my beautiful  grandson,I just want to be sure I don't have a leukodystrophy that could kick in and affect him badly.I am sure you have all heard of Lorenzo's oil and therefore adrenoleukodystrophy.
As it stands I still think I have MS albeit an unusual presentation or I have conversion/functional/software disorder.
I swear I have probably read more neurology books,papers and ideas than some neurologists have.
Things are moving along on daughter off to Australia area too,I now have her two moggies in residence and they are being fairly good,although Claude, the small village idiot version of a cat, just cannot work out a catflap so, is having to have a litter tray for now,much to my disgust.
Sarah is doing her rounds of goodbyes and doesn't yet know we are springing a big get together on her on Sunday ahead of her leaving the following weekend.
I am to become redundant as of 21st of this month,I rang the social who tell me I can apply after the 16th.
It is quite frightening to think that if my health doesn't improve I may never be offered work again.
Sid my oldest ex battery hen is really showing signs of slowing down now,I expect she won't quite make the second anniversary of her release on the 16th May.

I am a slacker.

I really do mean to blog more often,honest guv.
Trouble is I rarely feel up to the brain effort involved.
So here we go on a massive catch up.
Daughter Sarah whose new baby died last year has now broken up with her partner and has decided she needs a break and time away,we have all encouraged her to such an extent that she is selling up and going to Australia on a working visa for a year.It will be absolutely the thing for her.Unfortunately guess who gets to foster her two cats for a year? yup as of the 22nd of April I will have my one evil moggy and her two in residence.
I went for my day on the the neurology ward at Addenbrookes hospital,they obviously have a different meaning for the word day .......I was there by 7.30 having an MRI before 8am and had had my lumbar puncture and 17 blood tests and was on my way home by 10.30 am.Why the letter said anything about a doctor  I don't know ,I didn't even see a passing neurologist,I did however see the nurse practitioner who told me I was walking badly(I thought I was having a good day)took my bloods,she seemed very nice except she managed to avoid telling me what my blood tests were for no matter how often I asked,I found this quite belittling to be honest.Still the reading matter was entertaining in the waiting room.Yes this is a photo of the available selection !I won't get any test results for at least another week,I am just dreading the thought I may have something hereditary that I may have passed to the kids and grandkids.

A week or so ago I had an incident with my bicycle,the chain snapped,got caught in the wheel and the bike immediately threw me in a hedge,I looked around and saw no one was looking(phew) then spent ten minutes trying to disentangle disobedient legs from the bike,the poor thing is so worn out that replacing the chain makes no sense as the gears and brakes etc are all shot,it is going to be cheaper to buy a new one.This incident got me in quite a tizzy though as I cannot walk far enough to get to work I have a borrowed friends daughters bike(bicycle Chinese whispers there) for the minute.
I have just found out I am losing my job at the end of May(not related to neurological issues) The boss has said that as I will probably only get a weeks redundancy pay would it be worth her getting rid of me ostensibly for health reasons,I am not very brave and told her today that I would prefer the legitimate route and will fight it out with the benefits system when the time comes.
Bruce my tiny light Sussex bantam hen sadly died yesterday,she went to sleep and didn't wake up,she had a good life though,almost fourteen years of free roaming and meal-worms,if only all hennies could have it that easy.
Today it was brought home to me just how badly I walk,there was something of a head wind as I was cycling home from work,so I got off and started walking,doing my usual and using the bike as somewhat of a walking aide.A chap stopped his car and came up to me and said"are you alright dear? do you need me to push the bicycle anywhere for you" I thanked him for his kindness and explained that I didn't need any help.
The funny thing is I can walk perfectly normally if I am walking backwards,just shows that it is the wiring not the legs that are broken.



Pictures stolen from here http://www.berryreview.com/2008/04/25/new-blackberry-line-running-late/
and here http://www.partydelights.co.uk/themes/australia-day-decorations.aspx

Neurology ...

My neurology appointment was brought forward to yesterday based on my clinical need.
I want firstly to say ' sorry' to my doc, It seems I was expected to be better by now and for this to be declared a post viral thing,but sadly not, she has narrowed down diagnosis based on symptoms  to three possible conditions,
Hereditary spastic paraplegia   Rare about 3 in 100,000
Adrenoleukodystrophy  Ridiculously rare,even more so in women,if I have this it is a very mild version of the 'Lorenzo's oil' illness.
primary prgressive multiple sclerosis  Most likely out of the three known options.
I have to go to the neurology day unit at Addenbrookes hospital for a phalanx of tests,including blood,genetic,lumbar puncture,more MRIs etc etc.
I am now on amitriptyline for nerve pain and the dreadful headaches I am getting and baclofen for for spasticity(very tight stiff muscles) and spasms(cramps).
I can't have DMDs or physio or any real treatment until the cause of my symptoms has been found.......