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Discussion Starter #1
hi everyone

my name is jackie im married to sean,and have a wonderful son called jordon he is 13years old,i have m.e and fibromyalgia for 6years now.

the last 12months has gotten a lot worse,and over the last 6months i have a lot of new symtoms,which i know is something the doctor hasnt diagnoised yet.

He did a few blood tests a month back,and my nurse said i have borderline lupus,but my doctor says no i dont have lupus.

When i have checked the websites it suggests i may have cause i have more than 4symtoms of lupus,realy worried as i no time is of the essence to have a quality of live again,i am bedridden most of the time,and i just want to know what is wrong with me.

i know a lot of illnesses mimick one another (the ones that i have)

here is a list (i hope no one getting bored already well here goes)


fatigue
weakness
muscle spasms
swollen face
swollen neck
pain in ear and buzzing noise
left side of face more sore than other
little numbness on left side of lip comes and goes
left side of face feels like its been slapped burning
very pain joints i.e. shoulders,elbows,hip sometimes,knees,ankles, all swell
in fingers i feel wont work sometimes hands dont move
fingers feel like someone is crushing them/bones
face feels like someone is crushing it/bones
muscle spasms in my neck sometimes around my windpipe,this is hard breathe
ankles give way sometimes so do knees
pain in soles of feet when stand
rash just gone from neck realy itchy and painful raised rash blister like
sore jaw
sore mouth with ulcers alot
dry nose
dry itchy eyes
dizzyness
tripping over/nothing there

sorry to bombard you all would realy like feed back on these symtoms,some i have had for 6years others just over last 6months.

i know you wouldnt think anyone could have all this but i realy do.

please help if you can!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:sad: :worried:

lol
jackie
xo
 

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Hi there and welcome,

You certainly have symptoms that warrant further investigation by a rheumatologist. I'm not sure from your post whether the doc you mention is a rheumy or not? I presume so for the fibro etc.?

If you are only seeing a GP, they are not usually experienced enough to diagnose these diseases. They are, as you say, very complex.

I would say that, even if you are seeing a rheumy, it sounds like you need some adaptation in treatment at the very least. If you are basically bedridden, they should be able to relieve symptoms more.

Maybe it is time to get a second opinion? I don't know where you are in the world but there is a "find a doctor" section here which can help. Also some poeple choose to go privately first of all just to get a diagnosis and then return to NHS care (if you're in England) after.

bye for now,
Katharine
 

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Discussion Starter #4
thankyou

thankyou for your replies,it was nice to come on and see them no my doctor has never sent me tto a rhumy,when i was diagnoised 6years ago i seen a speacialist for cfs,but like i say i now need more answers i knoe something else is going on.

i live in england,i have used the private sector,which was great i got put on the list for tests within 2weeks through nhs,i also paid to see nuerologist again the same one he said its the same asbefore,omg it is not i have so many more symtoms.

anyway just trying to gain a little strength and hopefully get to the doctors this week,fingers crossed.


thanks again
jackie
xo
 

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With new symptoms, and it sounds like they are much worse in the last 6 months than before, I think it is definitely time to have a referral to a rheumatologist. I'd recommend you look through the "find a doctor" forum or do a search of the site for recommended doctors near where you live.

You may also ask that nurse for a hard copy of the blood test results to be mailed to you (not a doctor summary - but the lab results screen printed off!). Then you will know what has been tested, what the results were, and can take this with you to the rheumatologist in case some mix-up happens and they don't get to him before you do! We can also help you interpret them to some degree, and suggest other tests that may be important to run.

Good luck - I share many of your symptoms too by the way. Take care... & good luck getting some answers and helpful treatment soon!
 
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