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TobyJug
05-13-2009, 04:29 AM
Very hard indeed it started yesterday but I did not give in...
This morning tho waking up felt like a bad hangover, like I was hit by a truck last nite, then one sudden move and pains shot through my back as if I slipped a disc, my hands are barely moving and my fingers are stiff and sore, even typing slowly takes a lot of pain and energy...
My back is in sooo much pain at the moment that my stiff and sore neck and shoulders seem bearable....
Oh yeh and according to the doc a little while ago my Lupus has cured because the ANA came not back positive this time......
It is just two forms of arthritis........ hahahahahahahaha
He was suppose to send me to a specialist though (as he wanted a Lupus specialists opinion because the rheumy said I do have Lupus) from whom I still have not heard.... I am soooo sick of being pi$$ed about and I am in so much pain today that a clif nearly sounds like a good Idea.... nearly I say.... don't worry....

Well I am going to contact the Lupus clinic in Manchester myself today because I have had enough....

anyway sorry for the rant but had to vent for a minute.....

froggal
05-13-2009, 04:33 AM
Hang in there. Things will get better. I hope that you here from the specialist soon. I am thinking of you. Sending lots of good thoughts and prayers your way. I hope your pain eases up and you get some relief.

TobyJug
05-13-2009, 04:36 AM
Thanks Froggal..... x

gina
05-13-2009, 04:55 AM
Wow you sound like in alot of pain, i hope it gets better.
The last time i went to docs my ana was neg. she tried to say same thing but thats not the only test. if you have it you have it for life not what the ana test says. just not showing in the test that day. this illness is mysteriouos.
i hope you feel better soon. ;)

rob
05-13-2009, 08:48 AM
Hey there Toby,

Often times I say it's unfair that we have to wake up with a hangover without having had the good time and drinks the night before. I know how you feel.

And wow, how lucky you are to have your Lupus cured! Tell your Dr. that there's a few million more of us out there who would like to have his "cure". :wacko:

Are these so called Dr's a joke or what. Anyway, go easy on yourself, and stay away from that cliff. Good luck at the Lupus Clinic today. Hope you get to feeling better ASAP.

Rob

Saysusie
05-13-2009, 09:34 AM
Oh My Gosh...where did this doctor go to medical school???? Your Lupus is cured because your ANA came back negative????? What a bonehead!!
So, I suppose that, since he thinks that your Lupus is cured, he will not treat your symptoms! Am I right?? First, I have to say this...THERE IS NO CURE FOR LUPUS! IT CAN GO INTO REMISSION, BUT IT IS NOT CURED!!

Yes, indeed, find another doctor. One who graduated from a medical school! One of the most common things to happen is Lupus is relapse/remission; lab work that changes (due to the changing nature of the disease); and the development of new symptoms (or conversely, the disappearance of old symptoms). Your ANA can be negative and you can still be in a full blown flare up (as it appears that you are). When this happens, doctors are supposed to run other blood tests which includes tests for: Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies; tests for High titer anti-double stranded DNA antibody; and Anti-Sm (Smith) antibody. Also doctors should test to see if kidney disease is evident and if there is evidence of skin disease. It is becoming more common for persons to have ANA negative active Lupus. Furthermore, antibody tests and symptoms go hand in hand. Antibodies alone do not diagnose the disease nor do they dismiss the disease. If you have symptoms of the disease with a negative ANAl, it is still likely that you have SLE.
Find another doctor! I do hope that you start to feel better soon and that you find a knowledgeable doctor!

Peace and Blessings
Namaste
Saysusie

Rastagirl
05-13-2009, 09:40 AM
Rant away...no sorries needed. Feeling awful, the pain and crap and then having to deal with a 'uneducated' Rheumo, deserves a good vent.

Hope you start feeling better soon Toby...and hopefully they'll get you in quickly at that Lupus clinic.

Sending you Hugs...hope tomorrow is better for ya....

:cool2: Lori

wrightrs
05-13-2009, 09:49 AM
So sorry your doctors are not listening to you. So frustrating !!! I'm dealing with a bad doctor too. Hope you feel better soon !!!!

TobyJug
05-13-2009, 09:59 AM
Thanks u all for the replies made me feel a little better...

Saysusie u made me proper smile....
Lucky he is still treating the symptoms but yeh a bit of a bonehead like u said...

I rang the Lupus specialist clinic near me today and they say that I can only get in after a referral from my GP or rheumy... grrrrrr They say they have referred me yet I have still not heard anything...

wow can u tell I am unhappy today lol

anyway thanks u all for listening...

lucky7
05-13-2009, 11:52 AM
AWWWWW, thats why were here Toby!!! We listen to each others rants so we can help each other through!!!! It sounds like you are doing whats in you power to do my friend! You took charge to move things ahead and kudos to you for doing that!!! I hope you hear from them soon! If not then you make that call again!!!

tiggerlishus - Heidi
05-13-2009, 01:09 PM
hay tobes sorry to hear you going throu rough period still with health keep up the phone calls worse comes to worse do what my mum did with housing when we were younger and sat in thier office with all our world goods till they housed her!! that or go give your gorgeous baby son a lovely little cuddle :-D chin up mate xx

Pearl
05-13-2009, 01:43 PM
Hey Toby -

Hang in there. Just so you know, I am a proud, card-carrying member of the "Knights and Ladies of the Round Chihuahua Table"...duly appointed by my dear husband, who said one day that I reminded him of a little tiny Chihuahua dog that bites at the ankles of someone who has royally teed it off, then latches on and doesn't let go until it gets what it wants. (Trust me, he meant this as a compliment!) Can you visualize this?

Therefore, on this day, I take great pleasure in formally dubbing you "Sir Chihuahua Toby." Go forth, bark loudly, growl, and bite with honor. Don't let go of those docs' ankles until you get the help you need. Warn them, Lady Pearl Chihuahua is coming across the pond if they don't watch out, and tell them you've heard I have a ferocious bark and bite. :)

Feel better soon.

Jana

lucky7
05-13-2009, 02:12 PM
I LOVE IT JANA!!!!! Keep on abiting!!!!! WOO HOO!!!!!!:poke: Its not a picture of being bit over and over but hey, it works! Keep on APOKING!!! LOL

iseedeadmonkeys
05-13-2009, 03:04 PM
Hey Tobelerone...


Im feeling your pain tooo,

Seems to me as if everyone in UK flaring atm, could be pure coincedance! but me, you, heidi and 2 other friends i have with lupus are all flaring.....

could be the weather!

love

me
x

Angel Oliver
05-13-2009, 03:46 PM
Oh Tj sounds so painful. Which hospital in Manchester do you go to? I go there too.Whats your Doctors name? I may be able to recommend someone!!
Give you a telephone number!!! xxx

iseedeadmonkeys
05-13-2009, 05:45 PM
Flamming Mancs!!!

Sorry i couldnt resist, plus ya kno i love ya really even though ya footy team is not good lmao!!


ISDM
x

mountaindreamer
05-13-2009, 08:46 PM
oh toby,

so sorry you are dealing with this....i hope you can find your way around all of the obstacles and get yourself some good professional attention.

Your dr. gets the chair::chairshot:

TobyJug
05-14-2009, 04:32 AM
thanks again all for the kind words...
Today is a little better but that could also be because I have just took a truck load of pain killers....


Oh Tj sounds so painful. Which hospital in Manchester do you go to? I go there too.Whats your Doctors name? I may be able to recommend someone!!
Give you a telephone number!!! xxx

I am trying to get referred there at the moment as I think that my rheumy has not got a clue.....
I will PM u my number....


Hey Toby -

Hang in there. Just so you know, I am a proud, card-carrying member of the "Knights and Ladies of the Round Chihuahua Table"...duly appointed by my dear husband, who said one day that I reminded him of a little tiny Chihuahua dog that bites at the ankles of someone who has royally teed it off, then latches on and doesn't let go until it gets what it wants. (Trust me, he meant this as a compliment!) Can you visualize this?

Therefore, on this day, I take great pleasure in formally dubbing you "Sir Chihuahua Toby." Go forth, bark loudly, growl, and bite with honor. Don't let go of those docs' ankles until you get the help you need. Warn them, Lady Pearl Chihuahua is coming across the pond if they don't watch out, and tell them you've heard I have a ferocious bark and bite. :)

Feel better soon.

Jana

I love it............
That cheered me up....
Thanks Jana


I LOVE IT JANA!!!!! Keep on abiting!!!!! WOO HOO!!!!!!:poke: Keep on APOKING!!! LOL

lol hehe :)

Oluwa
05-14-2009, 10:05 AM
I'm with Saysusie..what a bonehead...a dillyweed.

Wishing you wellness that doesn't come from a pill soon. But the pain pills does wonders, eh...I enjoy a few myself to get over the hump..

Be well, Toby...Hey, how is Joshua and Debbie...

Hugs.
Love,
Oluwa

Grime
05-14-2009, 10:23 AM
hay tobes sorry to hear you going throu rough period still with health keep up the phone calls worse comes to worse do what my mum did with housing when we were younger and sat in thier office with all our world goods till they housed her!! that or go give your gorgeous baby son a lovely little cuddle :-D chin up mate xx

I told the VA today if they can't get my appointments straight an on the same day I'll just drive the bus up there and live in their parking lot. That seems to do wonders. Now I have 5 appointments on the same day.

I'd just walk into the clinic and tell them why you are there and you are not leaving until you are seen by a qualified Lupus specialist. Oh and be sure to let the newspaper or TV station know of your sit down so maybe the law well leave you along.

lucky7
05-14-2009, 02:40 PM
Good Advice David!!!!! Do it Toby!!!! LOL

MicRoMediC
05-14-2009, 03:01 PM
i'm sorry to hear this toby. i'm in a slum right now too. i hope you feel better soon.

lucky7
05-14-2009, 03:06 PM
AWWWWWW, sorry you are in a slum Micromedic! Pretend you can hear me singing the song "Dont Worry, Be Happy Now, woooo woooo hoooo woooo hooo hooo, dont worry be happy.........." Just wanted to send you some love! You might want to plug your ears though, i have a rechid voice! LOL:wacko:

MicRoMediC
05-14-2009, 03:07 PM
AWWWWWW, sorry you are in a slum Micromedic! Pretend you can hear me singing the song "Dont Worry, Be Happy Now, woooo woooo hoooo woooo hooo hooo, dont worry be happy.........." Just wanted to send you some love! You might want to plug your ears though, i have a rechid voice! LOL:wacko:

:laugh:HAHAHAHA! Thanks! your voice is probably better than mine!

lucky7
05-14-2009, 03:12 PM
Somehow i DOUBT it! LOL My son told me to sing him a song the other day cuz he Never TRUELY heard my SINGING voice, i said i dont think you WANT to ! I sang and he said, ok mom never mind! LOL:guitar:

MicRoMediC
05-14-2009, 03:16 PM
hahahaha! we can suck together! LOL

lucky7
05-15-2009, 11:34 AM
Yes, friends who SING bad together, SUCK bad together! LOL Through the thick and the thin!!! LOL :laugh: