Ill do my best not to repeat myself from a prior post and bore you all but without a little repition theyll be no context to the update, so here goes my best attempt at an update with minimal waffle and going off on tangents ... so prepare for waffle and tangents i suppose. But ive attempted to break it up into sections
SOME FOGGY BACKGROUND INFO THAT MAY BE A LITTLE CONFUSING AS I FORGET ALOT MYSELF
Ive been PA from birth (most likley be a stomache operation may be other stuff maybe both, alot of my older records are apparently hard to find from birth, i asked GP here, tjey said call original hospital called the hospial and said may be lost but oh well)
To the best of my knollege my jabs started yearly then one every 6 months then 3 month now its every 2 months but Drs and nurses push me to go longer without it as its *dangerous* despite many docotors notes from old doctors (looking through records of past 5 years or so it also looks like the amount injected each time was lowered in past 2 years or so)
Ive always had the following symptoms and ive been told by many NHS people it doesnt work like that and there all imagined
Burning bones (cant think of a better description sorry)
IBS ( a tad vulgar but i literally cannot renember a point in my life deficating normally )
Electric *shoots* up spine arms and legs
Pins and needles
Shaking/tremors mostly hands and legs
wieght issues (average wieght is between 6 - 8 stone, never made it above but constantly trying Dr always said i should be around 10ish )
Fatigue and tierdness sleep doesnt help
Very wierd and horrid feeling feet
A terrible memory (not just names , my own name, going to house i dont live at, kettles in fridge, no time perception asking same thing again and again, directions..
Theres probably more but you the idea, ive written this out 3 times now and each time my phone has died, the explorer has crashed or somthing along those lines has occured.
in the past year to 2 years my condition has got worse, the general symptoms i listed (and probably a few more but im lazy after a few phone crashes) and i started to get
chest/ heart pain
alot of breathlessness
Walking became very hard
Weakness... but ridiculous weakness, as in opening doors or draws is often near impossible and i need help
Getting dressed is confusing and hard
The scariest bit obviously being the heart and chest pain then the breathing difficulty
(I just deleted a big rant about the drs looking into issues with the chest pain cancelimg specialists and general treatment and so on... this is meant to be an update not a rant haha)
Long story short all this progressed into me needing crutch to get around... and take forever doing so, them a wheelchair and a friend to push it as i was just so weak, i barley slept as pain kept me awake
I had ti quit my job (its hard to make 100 kilos of fudge a day by hand, dance entertain and do the odd media thing and make people laugh while like this, work was very helpful and understanding but yeah there is a limit that and they didnt want me to die ... in a bit of a work addict)
I went to france and saw doctors there (gave up on NHS ) basicly woumd up being given a higher dose of B12, noticed all the normal things that improved with it did but more so (expected that though) but also my chest and heart pain changed to a horrid discomfort, it still kept me awake at night from generally being so unpleasent but it was definitley better than the pain
After some help from the WONDERFUL people on here and a few more chats with french doctor i started daily loading doses to see what would happen
WHATS HAPPENING NOW
After maybe 3 or more days loading doses the following started to happen and has been slowly improving since some quicker or more than others but i cant accuratley say...id be more accurate with timespans but im literally geussing most of this, i only started keeping a diary of it a few days ago as i did t think theyd be such a big diffence
I can walk normally again!! Not very far, but its with no crutch!! And no chair just breaks
All chest and heart pain has gone, as well as the discomfort that replaced it (this was slower to happen but once it did seems to be getting better alot quicker than the walking issues )
Breathlessness has gone, but i do still do this wierd gulping gasping for breath deep breath thing, like an attempt to regulate air... its a hard thimg to describe...but its much less concerning
Tremors and shakes improved ALOT, i still get leg tremors somtimes and my face twitches but barley at all, i can hold my hand infront of me and it doesnt move at all ! I know it doesnt sound impressive but that makes me so happy!
Its vulgar i know but solid stool! Im not joking when i say i dont renember ever doing that in my life... now its not all the time but its good most days
After a few days stopped feeling *high* and from it and started to platou more amd more or at least feel more normal and good all the time rather than super up or super down
No electric *shoots* in back or arms BUT it does happen in my legs
i do sleep now anywere from 8 to on a few occasions 16 hours but rest will help i geuss
My vision is sugnificantly better, which i didnt even realize was an issue, colours are brighter everythings sharper clearer and things stop bluring up / going in and out of focus when i read...
I dont know if this ones vision or mood but people look happier, before everyone looked kind of pale, gaunt white and upset or angry, now most people seem happy normal and have alot more colour and expression to them
My gums dont seem to bleed as much but that varied a bit anyway
Im generally alot more focused, able to pay attention and not start staring at walls and so on
My memory is still abysmal for names tome perception and generaly silly things like ... erm most recent one was making coffee and tea for everyone and one wound up in the fridge freezer thing etc but old memories SEEM to be returning, as in im renembering stuff from childhood or school and most of those (well basicaly all)have been completley gone for a long time
I DO still get burning bones, that hasent seemed to be effected much yet, i think its a little less, but not much
In the past day i have felt the 2 stabs of pain in my chest but its very very mild.
I havent noticed this myself but apparently my skin colour has changed to a better one
Theres probably more to add but right now without my diary thats all i can think off and i suppose there the main changes that ive noticed , i think i have 3 or 4 more days of loading jabs left (again im not sure, i have a wonderful fiance whos put up with me during all this and keeps me on track reminding me of all the things i need to do and when to do injections , whate day it is and so on... i hope soon ill be less of a burden as this improves and maybe my memory will get better)
after the loading jabs im going a month without an injection ,to see how quickly if at all symptoms arise, during which time we are
Leaving the UK (mostly for quicker cheaper better medical care)
doing a CT scan (im told cancer can be a bigger risk woth PA, i know alot of things seem to be getting alot better very fast but it could be masking other problems and id rather be certain )
seeing a heart specialist (PA can make heart work harder ? and i do have a plated heart duct valve too) and maybe a nerologist while having doctors look into how regular i may need the injections and at what dose ...
its far too early to make any proper judgements on my health, im aware i sound estatic but thats just joy of not being crippled and in a horrid painful place anymore, im well aware theres probably more bad to come
Sorry if all that was a bit long winded, writing stuff down helps me renember, your feedback helps and hey maybe theres others that have gone through or are going through simlar and this may help them At least feel better... its early days for me in terms of recovering from Whatevers been happening and not all the facts are in at all so it may not be related to PA , im no doctor
Ooo on that note i have a foggy memory that returned a day or two ago of one uk nurse telling me any more than 1 injection every 8 weeks could wind up giving me cancer... i strongly suspected fibs but any vadility to what she said? Because thats super scary!
Gambit (sorry id dont renember your full username but your great!) explained somthimg about hypertentesion from a ridiculously huge dose over 30 minutes can cause problems i think but yeah... were is the cancer thing coming from? (Just to be clear gambit never suggested to me it can cause cancer)
Oh and clivealive im new but the few posts ive seen if yours always seem a smile on my face maybe its just because i can renember your name because it ryhmes... -no offense - either way your awesome!
And one more time.sorry if ive done alot of repeating or rambling and tangents.. or made no sense and contradicted myself..i did try not too, i get mixed up alot and its normaly the lovley lady of my life who helps me renember stuff...not that i dont try to