Hi to all in the group,
I too have only very recently been given an initial diagnosis of Peripheral
Neuropathy, after a visit to the A & E department - I'm in the UK.
Been treated like utter **** from the referrals to Neurological hospital messed
up by my GP practice, to then being expected to wait to get seen by the
neurologist whose sub specialty is peripheral nerve disorders, on the Nhs (we
have a different health care system in the UK) when you can get to see him
privately without any real long wait, which is just disgusting!
Ive had to fight, fight, fight and push, push, push just to get what I should be
entitled to in the first place! And been treated like its all in my head, I'm a
hysterical female who swallowed a medical dictionary looked up headache, and
came up with tumour!
And what gets me is that this neurologist gave me a report back which was full
or inaccuracies and omissions, and then expects me to pay £270 for the
privilege!
And then expected to wait til September to get the relevant tests - curt letter
from him reminding me that just because Id seen him as a private patient (its
going to be a real struggle to pay him as I'm not working) did not give me
precedence to get a much sooner date on the Nhs (even though hed behaved like he
would have put me in there and then for the tests if he had the referral from my
GP in front of him (ie had they correctly sent it to him) and his receptionist
saying that I would be able to que jump) while slapping me with the bill and
getting a reminder phone call from his billing department.
Well there was no way I was having any of that, and rang the pa of upper
management, and managed to get an admission date of tomrrw, though he still has
missed out giving me the autonomic tests that I should also have.
Ive at one point lost all sensation in my entire body as it spread upwards, then
a few days later woke up with the left side of my face paralyzed (extreamly
frightening) and have the burning in my feet - right one especially and then the
muscles in them are I think are beginning to atrophy.
Week ago after going on a long journey which exhausted me, I ended up having it
then spread now into my forearms (the pins and needles and stabbing pain) and
the pads on my fingers now both really hurt and stinging burning, so its now
getting more difficult to type.
The burning is now in my legs, but a stinging burning and also intense heat.
Also feel it in my mouth (not the burning as yet, but the pins and needles) my
tounge which also at times has a change of sensation, aswell as the back of my
throat which seems to have this floating mass sensation which is hard to
describe.
Also stabbing my my left eye mainly but also in my right.
The thing is this all should have been picked up over 2 yrs ago when I
complained of loss of sensation in 2 of my fingers in each hand and a pinching
sensation in both of my upper arms, but the GP I saw was an utter nasssssty
2$""£$" and didnt want to even touch me because I'm not a skinny minny (not the
size of a house but yes overweight) which has made me VERY angry, as if it
wasn't for her attitude I could have started treatment long ago.
My blood pressure is sky high and have a real urgency to urinate as
soon as I wake up.
As the burning is now spreading through my body, its like its trying to connect
up with all the 'dots' on the 'map' of my body and (trying to not to think about
it too much, yet its really preying on my mind) is how long will it be that - as
Ive heard stories of this - where people cant sleep with even a bed sheet over
them without crying out in total utter agony.
Was hoping to finally be re-united with family abroad I haven't seen in 30
years, how can I go to see them when they wont even be able to touch me without
causing me total utter pain, or me be able to touch them??? Thats utterly
killing me.
I'm UTTERLY DEVASTATED and a roller coaster of emotions from wanting to kill
myself to kind of denial, to what the heck might as well eat what I want and go
out with a bang, to wanting to crawl into the depths of a very long burrow, to
not feeling bothered/motivated to eat - etc
Im seriously deeply frightened and getting no help or support from anywhere
really - how do you all on earth deal with all the emotions that come from
having this totally horrific cruel disease???
Ania
I have to say, I'm rather chuffed at the mo!xx
