Just want some opinions

Well firstly just want to say that I spoke to my gp today about being refered to another rhuemie (not happy with current one!) and he has said he will dk the referal, and to the rhuemie I asked for (had researched top ones in my area). So pleased about that :-)

Anyway I have been reading up on fibro, ME and CFS as others had suggested these could be the cause of my symptoms. I have noticed the symptoms in them all are very similar to lupus so it makes it hard to know, but I do keep getting negative blood results, could these point towards it being one of the above diseases instead of lupus? Just trying go get some more info from you lovely people as you are all so knowledgable :-) Some quite new symptomz have been twitching, baad abdominal pains with like a burning sensation and also tender breats and sore nipples (sorry!) I am not sure if these are linked, can't find any info on breast tebderness linked with any of these diseases except fibro possibly linked with fibro lumps in breasts? Not sure how much sense I am making here as my brain is rather tired now. Ha.

Hope you are all as well as can be and thanks in advance for any replys xxxx


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13 Replies

  • Hi Megs_Tom

    I was in a similar situation to you with all the symptoms but a positive turned continually negative blood result. Because of this I couldn't get referred to a rheumie so paid private and went out of area. She came up with loads of suggestions (fibro CFS lupus behcets) and my GP finally referred to a gP in my area. To cut a long story short they were rubbish and said nothing wrong, I emailed private rheumie who stuck me on her NHS clinic and has since diagnosed behcets. Its very similar to all the others but with a few extra things thrown in, including abdominal pain. It is more rare than lupus, and on a recent hospital admission with viral meningitis I found myself explaining to all the drs what Behcets was as they didn't know!

    A common symptom is ulcers, but I don't really get theses, so although the literature says you have to have them for Behcets, you don't. Chances are you don't have Behcets but its another avenue to explore and maybe worth a mention when you next visit rheumatology.

    Hope you get things sorted, but be patient and don't give up!

  • Thanks so much for your reply. I have nerlver heard of Behcets, will have to look it up! When you say ulcers so you mean in the mouth? Or like stomach ulcers? I find the NHS to be very poor in communication and not very helpful but I am going to keep pushing xxx

  • Ulcers of any sort, although I don't really get them. Hang in there, I spent a year under psychiatry because drs thought there was nothing wrong until I found my rheumatologist! Good luck x

  • Ive suffered with mouth ulcers for years now. They break out every couple of months, sometimes more. They are also very painful :-( eee I can't believe you where seeing apsychiatrist! Think drs just just haven't got a clue when they can't see something visibally wrong! Xxx

  • Hello #Megs_Tom

    Through my late teen years I would suffer about 1 week per month with a sore mouth, I had put this down to wisdom teeth for ages, but then realilsed it was sore throats and mouth ulcers. This I think was the first sign of my immune sysstem crashing. If that is true then it actually took me about 30 years to get my lupus diagnosis. With a lot of false conclusions along the way, including plenty of doubt about my mental capabilities.

  • It is amazing you survived for 30 years without any medication, the quality of life must have been atrocious! Is it all under control now?

  • It got pretty grim at times, all went very wrong when I hit 30, then picked up slowly, I even ran and did martial arts, but things had a way of going to pot at crucial times. I got onto anit inflammatories for a while, but stopped these when I got into the work up for a kidney transplant as donor -even they managed to miss the lupus after I said that I was querey lupus. Astonishing really.

    Hydroxychloroquine and omacor have given me my life back to the most part.

  • 30 years!!! That is a very long time!! I've been getting mouth ulcers and swollen gums for as long as I can remember back to being a small child and I'm now 23 so probably close to 20 years for me now. Don't know why anyone would make up all these symptoms!!xxxx

  • Yes, why would be imagine, or wish this life for ourselves.

  • Exactly, but yet the doctors think we must enjoy 'wasting' their time 'complaining'! At least we have this online community of people who understand each other xx

  • Hi megs_tom,all I can say to you is please don't give up,pester people until you get some answers,my daughter has been unwell on and off since a baby,and fir the last four years has been messed about by her g.p and medical profession,she is hopefully near to getting a proper dxs,she has to wait a couple of weeks for skin biopsies,but her bloods have shown lots of problems going on.she had to make a formal written complaint about her poor treatment at our local hospital,so now someone is finally sitting up and listening to her,instead of dismissing her,she has now git scarring on her heart valves and kidneys,her skin is covered in sores,bless her,she may now have steroid induced diabetes and many more issues,but she will not let people dismiss her now,she is the one with the damage made worse by doctors ignoring her,and changing dxs,then changing it back to suit themselves.You Are!!!! Doing the right thing by asking to see other doctors,don't feel like you are pestering people,I know that is how it feels sometime.I hope you finally get some answers soon,bless ya,I have fibromyalgia,Reynolds and syjorgens,I do not have lupus,fortunately for me,have a look at fibromyalgia UK on healthunlocked,it may help also.Take care,Sandy.

  • Awww that is awful! This is what worries me, that they are going to fob me off until it causes internal damage. I refuse to give up. It is easy for them to fob us off and make us wait ages between appointments , but they don't have to live with this pain day in day out! I am going to prepare myself for seeing the new rhuemie (if and when I get anappointment!). I have looked into other possible dirsorders that have similar symptkms to lupus. I am going to print them off to show the rhuemie and discuss whether these are possibilities to look into. Thanks for your well wishes. Take care xxxx

  • I read you. I have been misdiagnosed so many times that I no longer trust doctors. Here in the U.S they only see you for five mins, and expect to know what you have. Also, every hospital uses different Ana tests with varying test results. Is it the same in the UK?

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