Well that went well

[Alan55]

Saw rheumatologist for 20 minutes today said all he could see was some sun damage to my face and hands even tho I have spent the last 40 years working in the sun feel like total fraud now

[kazp]

You feel like a fraud? Tell all please maybe i can ease this burden?

[Alan55]

Cheers kazp all my friends family etc can c how I have been on and off for the last 21/2 years after being a perfectly healthy person who gets up the same time every morning goes to work (bricklayer by the way physical job) who all of a sudden runs out of energy ,18 degrees outside on sofa thermal vest , t shirt , heavy cardigan jeans thermal socks and trainers on wrapped in blanket with hot water bottle freezing cold , hurt to much to move the list is endless my friend my hands at the moment are bruised and purple coloured all this dr could c was apparent sun damage this is without the other problems I have eyes dry mouth etc don't know where to go with this next any pointers would be much appreciated my friend

[Natura]

Alan...don't get me started with doctors..I dont think very highly of them. My husband always says, there are bad mechanics out there...that applies to doctors too... Get another opinion. Find the right one that listens to you..I can totally relate to your pain. My husband is a carpenter and is out in the cold all winter too. I wish I could ease his pain. Terrible...some people work so damn hard, and are very under appreciated... Hope you find an answer...

[Shadows-walker]

Hi Alan have you considered a second opinion , I was considering it but have been told to hang fire ,my rumy has confirmed raynaulds , sjogrens ,fibro ,and cronic fatique , he found lupus antibodies last august but is adamant I don't have lupus but connective tissue disease ,I don't have many skin conditions just funny nails and the odd patches of psysoris when I was rushed into hospital 3 years ago I was covered head to toe in

a rash which burned to the touch then ,but I think I said I lost the plot with him last time I saw him .my dad was a bricky and I know how hard he worked , he had to be forced to slow down when he became ill and it goes against the grain to give in ,you know you ,you know your not right,get a second opinion ,I was told they are about £250 to go private it could be the answer for you ,

[Alan55]

Thanksshadowswalker my wife spoke to Paul at lupus uk and he has told us to demand a second opinion at ugh London my dr has already diagnosed me with raynauds now since last attack on me had to go to eye hospital because my eyes have dried up and having to use eye drops also. Drinking water all day due to dry mouth my fingers are swollen my knuckles are purple my hands hurt I have worked in the sun and cold for 40 years go red as soon as light touches me now look like a drunk. This so called specialist asked me nothing bent my arms and legs a couple of times said nothing rheumatologicaly wrong with u goodbye wonder why we r stressed

[Hidden]

Really do feel for you Alan. I spent years being treated like this, and so have lots of other members. I went private in the end, and rheumy put me on his NHS clinic...........It is wrong, I know. Not all rhuemys are good with lupus. Even with a diagnosis, you still have to fight your corner, when a new 'upstart', comes along. I'm sure you are feeling totally humiliated, by it all but, unless you want to carry on suffering, you have no choice other than change Drs. Harsh words, but what are your other options. Take care, and my hubby is a builder by the way, and he does know the difference between, occupational aches and pains, and other ailments, so I know what you are trying to say.

[Alan55]

Thanks 6161 I was warned should have listened a thoroughly horrible Man .I told him I have a symptoms list he said don't need to see that didn't let me get a word in edge ways have sent an email to the hospital complaining about him just to make me feel better .i am seeing my dr again on Monday will demand second opinion and tell hereabout my ordeal.the guy should think himself lucky that my hands hurt so much ,if not he would be making a trip to the dentist now and I am a happy go lucky bloke who would not hurt a fly thanks Alan

[Hidden]

I know I said you have to fight, but I didn't mean literally !!!! Lol.... Good luck monday

[Alan55]

Thanks 6161 going to go to drs Monday ask for my complete medical records for the last 21/2 years blood test results etc. am then going to make a private appointment with dr eisenberg at UCH London do not want to see any more quacks about this if people you have known for years can see that u are ill why can't so called specialists

[Hidden in reply to Alan55]

Think I've heard of him. If so then he is a good Dr. Yes take copies of all test results. Very important as they will be part of your diagnosis too. They will add more bloods to be done, so take your flexible friend. Some private Drs, give you a list for your GP to do, saving money. You just take the results back to next appt. by the way, GP has to do referral letter to private dr, so get that on Monday too. For obvious reasons, I hope you have not got lupus or anything incurable, but either way it needs sorting. Take care

[Alan55]

I have just started seeing another dr at my surgery she actually came to see me at home as I was to bad to get to her a month ago when I took her my symptoms list this week she said it was fine and because steroids seem to have stopped the attack she thought it was definitely immune system problem

[Hidden in reply to Alan55]

Then she should be open for a referral. Saw my dr tonight, am flaring big time and going on hols tues. She asked why I had left it so long to see her about it. I said, I was too ill to come down the surgery. !!!! Has pumped me up now with injections and higher steroid tabs. I really hope this limbo will end soon for you Alan, but a good GP is another essential, on the list.

[Alan55]

Sorry u are flaring 6161 do feel for u ,steroids at the moment do seem to be a lifesaver for us. Hope you feel better for your holiday take care Alan

[onamission]

I also have many symptoms of Lupus I was sent to see a DR he didn't have a clue then he realised I had COPD asked if I took steroids when I said yes he said it was the oral steroids that was causing my symptoms had he of asked I would of told him symptoms started before I took steroids. We only have him in our area I have looked at our local Nuffield hospital they have 3 DR's at our Nuffield and he is one it would cost £140.00 just to see one then all the tests but I will never go to that DR again I would rather suffer the symptoms