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View Full Version : The Verdict is in......I Dont have Lupus.



Angel Oliver
02-06-2009, 07:18 AM
Hi Everyone,

Well as you know i wrote to my Doctor as he said i have Lupus then said the blood work came back and said it 'must. be M.E. Well ive received the letter from him today and he confirms it's M.E. I am happy about this now, but now i have to back track and confirm this to everyone and start the fight with benefits all over again.

Is it still ok if i post here? I feel a bit of a fake now even though i have many of the same symptoms. Anyway.....the fight begins now :)

Love
Angel.xx

rob
02-06-2009, 07:38 AM
Of course it's still OK for you to post here! There's nothing fake about you. My brain is totally socked in with fog. Tell me again, what M.E. stands for? I'm sorry, I know it but I cannot remember. I'm glad you don't have Lupus.

Rob

Angel Oliver
02-06-2009, 08:09 AM
Thanks and im foggy to cause i can not remember....erm something like Myalgic Enc......something...lol....chronic fatigue syndrome. I'll have to write it down as i never remember the name. Ive got bad toothache and face ache still so am typing to the throbs :)

Hope you are ok today. The snow is melting now here where i am but down south they've got it big time. The weather man says tonight i may have more.....so my boots are ready for me to crunch in the snow :)

Love
Angel.xxx

Angel Oliver
02-06-2009, 08:12 AM
Rob its called...Myalgic Encephalopathy.

iseedeadmonkeys
02-06-2009, 09:32 AM
YOU best be staying here lady!!! :D

I like talking to you, and your not a fake...........far from that, my aunt has M.E our symptoms are very similar too, you stay and keep posting away :wink:

ISDM
xx

Angel Oliver
02-06-2009, 11:39 AM
Ah thanks ISDM and i like chatting to you too :)

So how does your aunt cope with the M.E and the ignorance of people?

Love
Angel.xxx

rob
02-06-2009, 11:59 AM
Myalgic Encephalopathy. I'll have to read up on that, as I'm not familiar with it. Is it an autoimmune disease Angel?

Angel Oliver
02-06-2009, 12:03 PM
Oh Rob,

I have big fog due to my throbbing face....lol....i carnt remember.Alls i know is i hurt and am tired and want to win the lotto to get my dream home and private doctors and a beach and a yatch.....lol. :) Ah to dream :)

Love
Angel.xx

Angel Oliver
02-06-2009, 12:08 PM
What is ME?

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Early reports dating from 1934 described epidemics of the illness (see Research Publications on ME epidemics for more information) — such as the 1955 outbreak at the Royal Free Hospital in London — but nowadays it is more common for endemic (sporadic) cases to be identified. ME is classified by the World Health Organisation as a neurological illness (International Classification of Disease 10: G93.3).

The cardinal symptoms of ME are profound, generalised post-exertional loss of muscle power (fatigability); muscle pain that may include tenderness and swelling; and neurological signs. Patients are also prone to relapses which may take the form of recurrences of the original systemic illness, or fresh episodes of muscle weakness, neurologic changes or well-defined cognitive problems. As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is post-exertional, often delayed, and quite unlike the ‘fatigue’ experienced by healthy people.

The cause of ME is still unknown, but there is unlikely to be one single causative agent. Several early epidemics appear to have been triggered off by an outbreak of an infection with enteric organisms or poliovirus which then subsided, and many patients report an infectious onset to their illness. However, in others, there may have been a variety of contributing factors — infectious, traumatic, environmental and endogenous — all of which can lead on to a condition which shares a set of common symptoms.

Angel Oliver
02-06-2009, 12:14 PM
There is no treatment or cure for M.E. and patients have to suffer with some of the most appalling symptoms, including extreme fatigue, headaches, muscle pain, muscle spasms, insomnia, sleep reversal anxiety, constant sore throats nausea, dizziness, sensitivity to sound, a light touch, taste and smell swallowing problems in the most severe cases, seizures and paralysis.


Hope this helps Rob i got it from the M.E site.

Love
Angel.xx

rob
02-06-2009, 12:17 PM
How are you doing with this news?

Angel Oliver
02-06-2009, 12:26 PM
Of course i am happy, yet in the back of my mind i so do not trust the doctor. I think its because ive been told so many things and they have always gone back on what they first said. Anyway, i think i am too tired to keep asking and i am going to get used to my new label of M.E again. I am so not looking forward to back tracking telling everyone again it is now again the M.E diagnosis as i am going to sound stupid, through no fault of mine. I am worrying about the benefits and how i have to go back to people thinking....''oh it's all in her head''. I know i am sick.I was a very active person before i took ill. Now i have to convince and prove myself all over again. Im so tired of it all to be honest. My mouth is throbbing, my jaw is aching....my body is too tired for all this again. But i'll plod along and hope one day.........one day i may get and feel better.

Thanks for asking Rob and hope you are having a good day today :)

Love
Angel.xx

iseedeadmonkeys
02-06-2009, 02:38 PM
Tbh with you id rather not have lupus nor M.E,

My aunt is a fighter like you will be :) she has lost the use of her legs now so goes everywhere via wheel chair, she has a very strong person of a husband who has stuck by her so far for 14 years since she got it DX, he is my mums brother and he is with her like she is with me, 100% suportive, ever wanna a chat about it, il be meeting up with her soon il ask some quetions etc xx

Spanglishqueen
02-06-2009, 03:28 PM
First of all you are not on the site ISDM went on where they are petty with little things like user names :D or labes. I see YOU not your symptoms when I read your posts (although I'm sure you are not a 3lb kitten) :rofl: Anyways I'm glad you finally got an answer.

sits_inthe_corner
02-06-2009, 05:06 PM
Hugs to ya Angel Oliver

No matter what is causing your pain and fatigue you can certainly identify with every one on the board and I welcome your company and comments. :)

Angel Oliver
02-07-2009, 03:43 AM
Oh thanks for supporting me everyone.I sooooooooo wish you all were my Doctors and people i deal with everyday cause you all understand.Instead i deal with people who do care i think but act like they dont care if you get my drift.

ISDN thanks you for the offer but i have so many questions lol. I think to be honest, i can deal with my symptoms whatever they are even though they hurt., as ive been putting up with them since it began 2004......its the ignorance thats actually stressing me out more.Knowing what i have and how i know people will treat me again....like here's some more pills now go away.....if you know what im saying. Its such a struggle so i hide away and feel invisible to the world. The worst stress is going back to that Shaw Trust who just say....oh M.E oh you can work with that......oh yeh thats why ihad to stop work a year ago....im sure they think i do this for fun and if i dont go they stop my money.....so i'll have to go through the panic attacks, feeling ill and in such pain to sit there for an hour, wasting my time....im dreading it.
But thanks so much to Spanglishqueen i did laugh....maybe a 3ton kitten lol :)
And sits inthe corner for liking my company....and Rob too.

love
Angel.xxx

iseedeadmonkeys
02-07-2009, 04:00 AM
Angel :angel:

You are person, not a number :!: you shouldnt have to hide away,
I know you are stronger than that, you can ask anything honestly :)
When i was in hospital with my 1st dvt there was this girl in the same ward same age as me (17) and she had M.E i saw her do some very heart breaking things, she completely gave up in herself - i think you know where im going with this one, now although i didnt at the time know anything about the illness i sat with her the whole time i was there 24/7 just trying to keep her sain to be real with you! she was a really lovely girl and we had soo much in common as i left i never stayed in contact with her but i felt i did my bit, and from what i could gather she picked herself up and returned to the world with her head held high,

Im always here for you, if you want a chat rant or anything

Increase~the~peace
ISDM
xxx

Angel Oliver
02-07-2009, 04:03 AM
Ah thanks so much. I think i rant a bit too much lately lol but in a good way....i think :)

Thanks for being so lovely and i hope i can help you when you are ranting too. :)

Love
Angel.xxx

iseedeadmonkeys
02-07-2009, 04:15 AM
I shall hold you to that one, you never know when i need a rant the lupus is soo unpredictable atm!!

ISDM
xxx

Angel Oliver
02-07-2009, 04:22 AM
Oh good. You know when you seem to have every ailment in the book....thats how i feel and im constantly telling you all about it. I know ive been in hospital with all the mouth problems n stuff.......but i'll feel like im giving something back if i can help.I probably write rubbish posts but i'll have a good go. I might surprise myself and actually help someone for a change lol :) I hope so.

Love
Angel.xxx

iseedeadmonkeys
02-07-2009, 04:29 AM
You might actually help someone? you help me! you make me smile, and you know what they say...............every little helps :D
oh and btw ure posts are not rubbish your doing it again!! believe in yourself we love you 0X

xx

Angel Oliver
02-07-2009, 04:44 AM
lol....old habbits n all that :) Thanks for being kind and i am glad i help you.

Love
Angel.xx

rob
02-07-2009, 06:33 AM
Oh good. You know when you seem to have every ailment in the book....thats how i feel and im constantly telling you all about it. I know ive been in hospital with all the mouth problems n stuff.......but i'll feel like im giving something back if i can help.I probably write rubbish posts but i'll have a good go. I might surprise myself and actually help someone for a change lol :) I hope so.

Love
Angel.xxx

Angel,

I'm going to jump the next eastbound ship and come over there to tell you that you are important, you are not a number, and you write anything but rubbish in your posts. You give back so much, you have made me, and many others here smile ear to ear more than once. Your words of encouragement and caring nature help alot of people. And just to be sure you know it, you do not have to have Lupus to be a member here. You matter, alot.

Rob

Angel Oliver
02-07-2009, 06:48 AM
Ah Rob,

Thank you for being so kind thanks allot. And believe it or not your all make me smile (even when it hurts) allot.

love
Angel
(blushing)xxx

mountaindreamer
02-09-2009, 03:26 PM
hi angel,

don't you dare go anywhere. You and I joined ab out the same time, and you are such a part of my daily smile med.

Friendship does not change just because the diagnosis did.

share a smile, I look forward to lots of "angel posts",
phyllis

Angel Oliver
02-10-2009, 04:46 AM
Thanks Phyllis. Hope you're adjusting to being back home and feel a little better.

Love
Angel.xx

NoodleMom
02-10-2009, 07:34 AM
Hugs to ya Angel Oliver

No matter what is causing your pain and fatigue you can certainly identify with every one on the board and I welcome your company and comments. :)
yup :wink:

Kasey

Angel Oliver
02-10-2009, 10:34 AM
Thanks Noodle mom n hope you are having a fab day :)

Love
Angel.xxxx

sick n tired
02-11-2009, 08:33 PM
hey Angel,

Stay with us...we have much in common...like - you hurt and we hurt.
Right now my head feels like it is going to explode. The doc said after I get better with the water around the heart thing(sorry can't remember the name) He wants me to go to a neuro. and see if there is something else with my nerve endings...I am in such a fog, I can't remember any names at all.

Well Angel please stay with us. I don't talk much because my brain and hands don't always cooperate, but I do get on and read and feel like all of you are my family...the real one doesn't understand...and you are part of the family.

Angel Oliver
02-12-2009, 05:14 AM
Oh wow.Thanks for taking the time even being so ill and sending me that lovely message.Thank you.....and the family thing.....yeh! I hope you feel better soon.You rest and take care of yourself.

Lots of love and hugs
Angel.xxx

Angel Oliver
02-16-2009, 05:36 PM
Hi everyone,

today i saw my nurse.You know the one who was'nt very helpful last time when i needed support.Well i have had allot to cope with, what with a doctor who prefers the dead patients and the rubbish apology letter from the hospital.

Well she actually was very helpful today, after i pulled her about being so disinterested in lol :) She is going to ask her superior and find me an advocate to go with me on all medical appointments, just to be my voice till i gain some confidence back.It may take a while, but im hoping the angels send me someone.
Also, i am writing another letter to that hospital who left me outside in my nightware looking like a druggy.Ive rang them today and explained they have a major communication problem and i will not be fobbed off as that incident was bad and has scarred me for life. (i did imagine you all there on the phone with me ). There apology letter was terrible really like they didnt read it properly.Im so angry now with them.

So hopefully, i may have good news.

love
Angel.xxx

mountaindreamer
02-16-2009, 05:51 PM
hey girl,

you sound like a "rabid pitt bull"....and rightfully so. thank goodness that the nurse actually has a heart. I think the advocate at dr. appointments is absolutely a brialliant idea. Keep me posted...I am really interested in how this works.

share a smile today,
phyllis

Angel Oliver
02-16-2009, 05:56 PM
Angel grawls rrrrrrrrrrrrrrrrrrrrrr lol :)

OH i was so surprised and grateful to her.I just so hope i can have that help.Tomorrow my Doctor wanted me to call him then go to see him.BUT, i have no faith in him anymore.My nurse seems to think there is ''something'' and she was going to look into it for me as a matter of urgency. I think when i told her about her behaviour last time, its done the trick,because she could see i had absolutely noone else to turn too. She even told me NOT to just leave the hospital complaint. I did feel she 'heard' me. I'll let you know Mountain dreamer when i find anything out. Thanks allot.

love
Angel.xxxx

KathyW1958
02-16-2009, 07:26 PM
Hi Angel,
Please do definitely keep posting. It does not matter if you don't have Lupus. I am glad that you don't have it, but you know the more folks that knows about this illness the better. We enjoy talking with you. Please, Please do keep posting and reading our posts.

Hugs,
Kathy

Angel Oliver
02-16-2009, 07:38 PM
Oh Kathy thanks so much.I so enjoy chatting to you too. I saw your photo..you look lovely and its great to put a face to your chat now. :)

love
Angel.xxx