Can I still use this site ?: Well saw my Rumey con... - LUPUS UK


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Can I still use this site ?


Well saw my Rumey con today left in tears the second time in 2 visit ,he told me I don't have lupus even though he told me last august that I had lupus antibodies in my blood , and gave me info on it and told me to read it ! So today my breathlessness when I try do anything is hyperventaling , my lung test are all fine normal . But I do have chronic fatigue , fibromalager , he has put sjogrens in the mix ,still waiting on lip biopsy eye specialist ,and heart test ,has told me I have connective tissue issues ,he doesn't seem to want to take on board my history of child hood rash on face that a 60 yr old soon to retire GP said it was some type of pox never seen anything like it before so gran bathe me in jaysfluid to get rid of it I still rememember the pain .at 17 had glandular fever hair started to fall out after that and discovered I was allergic to septrin . Sent to dermatologist who told me I was animic and was more concerned about me having children but I wasn't interestedwith all that then only heard animic and hair loss iron tablets would have to be taken and that would help with that and that was all this 17 yr old was interested in .(went on and married my worst nightmare but didn't realise it. )

After the birth of my second child had what they told me was an allergic reaction to having a boy (having forgot all about dermatoligist )was told I had gutetate phrsoris (can't spell half these terms sorry ) that lasted about a year put loads of weight on so applied for diet clinc trail at local hospital as they were advertising for gunnie pigs had bloods done and fasting test and was told I couldn't do it as I had Gilbert's syndrome ,basically liver doesn't work properly can't break down toxins , anyway back today. He's told me I am not well enough to work he wants me treated for depression but I don't think I am depressed just frustrated with my self for not being able to function like I should an I am to wait and trust him to sort me out my employers want me back to work 1hour a day 3 days a week ,but he has said I am not well enough what do I do next .?

Also forgot raynaulds in feet and hands always have a couple of hot water bottles on sofa and have just treated myself to a electric foot warmer . Also since he took me off all my drugs hydroquinine etc the pain has kicked back in everywhere especially in my hand s and feet ,he has said once we get the results of all the test he will put me back on it or one like it coz i did respond well to that and was able to sew again but now I can't also now get really bad headaches all the time only had them when I was married no joke intended :-) thanks for reading.

3 Replies

Wow shadowswalker, I can give you a very short answer. Private message or e.mail, Haley or Paul. These are our administrators. They can give you a list of lupus, NHS specialists in your area. It's time to give someone else a go !!! I think this Dr knows nothing about lupus. Is there another rheumy at your hospital you could see, and what does your GP think about all this. You are treading the path of many lupus sufferers before you. Myself and others went through this hell, but from somewhere we found the strength to keep on going to prove ourselves. Of course you must continue to post on here. Trust me you are not the only one going through this. Not all rheumatologist are knowledgable about lupus. I know by experience. For me I paid a one off fee with a private rheumy, he put me on his NHS clinic, and the rest is history. Really feel for you, don't give up.

Hi Shadowswalker

What a tough time your having!. Hang in there with your Consultant because he's still willing to treat you despite changing his diagnosis. As to your employer, your local Citizen's Advice Bureau would be able to help you deal with them as they have employment specialists and they'd also help you claim any benefits you may be entitled to if you have to give up work.i hope I've been helpful. Hugs.x

Thanks that was the only good thing that came out of yesterday's,car crash ,that he still want to treat me ,I wish he new me berfore all this kicked in ,see how I really am ,seeing GP tomorrow ,if you see my above response to my question to 6161 you ll See my thought process on all this I don't know which way to turn ,I am winging it I don't won't any of all this .sorry really quite fed up

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