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elisabethm
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Discussion Starter · #1 ·
Was at the rhumy yesterday he said he is not sure if i have lupus he said i was so disapointed as i thought i finally had a diagnosis after years of ill health only to be told now not sure i was mad at him as i have been on the palquine for over a year i was going to take hubby in with me but by the time he parked the car i was out from him he said i will do more blood tests and then had to go and get xrays of my hands wrist hips pelvis feet he never gave me another appointment he said he will send me a letter i was so angry with him why one doc says yes you have it then one is not sure he also made me laugh as he said i might put you on a higher dose of the paliqune what is the point of that my hubby son daughter were mad that i have been taking medication that i might not need i know that i shoud be happy if idont have it but so frustrated now not knowing what is wrong with me :sad: :sad:
 

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Hi Elisabethm
I am not surprised you were mad, I would have been too. It is awful to be told one thing and then another.
Can you not transfer to another Rheumy? I have just transferred because I wasn't happy with the one I had.
What sort of Blood Tests have you had?
Hope you get some answers soon
Take care
Love
Meryl
 

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What dose of Plaquenil have you been on? It sounds as if this doctor believes something autoimmune is going on, but not quite sure what official label best fits it. Whether you have RA, or lupus, or UCTD, Plaquenil is a treatment option for all of them. There are better and more specific meds for RA in particular, so if the xrays indicate you may have rheumatoid arthritis then a medication may be added.

It is very frustrating and maddening to not know what is wrong with you... I've felt that way **since** diagnosed with lupus because at times the doctors do not believe that all of my symptoms are due to lupus but they don't know what it is due to either. Things like heart skipping beats (doctor heard it even one time!), headache, stomach bloating, chronic rhinitis and sore throat, etc.

How long do you have to wait for an appointment? Perhaps you can call and ask about when it will be and ask to be informed what the xrays showed. Or maybe he was saying he'll inform you of this in the letter?

A second opinion is often a very good idea - just remember the two doctors may not agree either!
 

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elisabethm
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Discussion Starter · #4 ·
new doc

thank you for your replise the dose of paliquin is 200mg twice a day i have been so sick all weekend it was our 35th aniversary yesterday and i had to put a face on for the rest of my family my sister got me the most beutifull elephant i have ever seen it has a tear drop at one of its eyes then had a house full with our daughter son his partner and 3 of our grandchildren it was a good day but i was glad to get to bed last night still sick today but had to thank you for your replies it helps to know that other people take the time to reply :) :)
 

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Hi, I would do whatever I had to , if it were me, to get referred to another Rheumy. Don't take this wrong, but your dr. put you on the dose of Plaquinel, not you Husband or children, so don't ever go off a drug unless you dr. tells you to do so. Could it be that you are just mad at what your dr. said?, or could you be beginning a flare?
Keep posting.
 

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elisabethm
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Discussion Starter · #6 ·
hi half pint it could be as you said the start of a flare as i have been sick since satarday hands have a blue tinge to them today got a noise in my ears that is driving me mad today getting central heating work done aswell today felt like telling them to go away but i need the work done so have been frozen all day making me more grumpy:) than i normaly am :) on the lap top to try and take my mind of how i feel somebody must be worse than me not:lol: :lol: speak to you again elisabeth
 

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Some rhumey's like to do their own testing, with their lab.(I didn't like my first rhumey) When I went to my 2nd rhumey the first time he sat and went over all my symptoms. I sat there thinking he is going to tell me I don't have lupus. He gave me a percentage of how many people who have been wrongly dxed with lupus.

The fact he did more lab work and ordered x-rays he thinks something is going on.

Hang in there and let us know how you are doing.
:hug:
Lyn
 
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