2 years and still with no diagnose!!

i have been suffering sore hands, face and other areas for years. last week was the first time sle was mentioned. am waiting on results of blood tests as apparently some tests were verging on positive earlier but i was never told. feel like nobody believes anything is wrong.i also suffer from depression and the tiredness is unbelievable. at least i know i am not alone.

Hi

I have had SLE for the last 23 years but only diagnosed 7 years ago. At last an answer to all the strange illnesses and pain.

The only thing i have never been able to cope with is the extreme tiredness i get. Even when on medication this did not go.

Off medication for the SLE its been none active for 2 years apart from the

extreme tiredness.

Take care all.

Lizzy

i have been feeling unwell for nearly seven yrs,i have lupus symptoms but blood tests come back ok. two yrs ago test showed low levels of antibodies but has been fine since. also have rash across face,extreme tiredness and joint pains,i am on iron due to low iron levels. cant get the doctors to listen they keep saying you can make yourself get these symptoms. dont know what to do,has anyone else had same problem. :?

Hi Chel.

I understand where you are coming from, I was in pain for a long time before they diagnosed me with \"fibromyalgia\"......... but as the surgery I was in I had no faith with I decided to change surgeries and thankfully I did....... I had abnormalities in my blood for 2 years, sed rate and liver function test............ anyway my present GP wouldn't treat me at first until he took my medical file home as there was too much going on he said and so I went back to see him and he written a letter to see the top Rhuemo at the hospital......... my appointment was in feb, and the Rhuematologist predicts auto-immune activity....... possible auto-immune hepatitis and or polyarthritis??? the ANA test was negative but an Anti-Mi-2 was high so I do not know what this means......... I will not know until June???? It is very frustrating not knowing why one is i so much pain....... I am in pain 24/7 every joint from my head to my toe, I am 36, and just like you hoping something stands out in the blood just to help the pain............ please change GP's if he/she is not listening as you deserve to be treated the way a patient is suppose to......... after all if I hadn't changed GPS as I was not listened to by my previous surgery, if for example I do have auto-immune hepatitis it could have ended up more serious if ignored which could lead to sclerosis of the liver !!!!! You are the patient, and if you are in pain please do not ignore it, get someone whom will listen as that is what the doctor is paid to do!!!!

Good luck, and I hope you get the treatment you deserve x

Kind regards

SES x

Hi

I think that these types of diseases are very hard to diagnose and you have to keep going back to your gp and make them listen.

I was lucky in the fact that I had one positive rheumatoid arthritis result about 7 years ago enough to get me to rheumi. But I was ill for many years before small things that were never put together.

You can still have the symptoms and not have any positive blood results.

Lizzy

Hi Lizy I am predicting this also as my nana had RA but the Rheumo is listening this time where as a previous one I saw two years ago ignored me..... all thanks to my doctor I think as he is brilliant!!!

I hope you are having a good day xx

Regards

SES x

Hi Ses

I hope it all goes ok for you the hardest part is the waiting part my appointments are between 8 and 10 months apart and when you are not feeling well this can cause loads more stress you just don't need.

I'm not having a good day I am trying to come to terms with what i was told yesterday. Rheumi have now decided i have fibromalagia and when i went to my docs to pick up my prescription I was told i was turned down for CBT as i wasn't a suitable candidate without even an assessment and my doc told me i can't have councelling. So now trying to stop a major panic attack and think this mess through.

Perhapds all gp should try living with an auto immune disease.

Hang on to any good doc you find i wish mine hadn't retired.

Take care.

Lizzy

Hi Lizy... well thats what I was diagnosed at first \"Fibro\" but now the Rhuemo says no I haven't...... anwyay there is loads of information out there and if you look on the \"fibromyalgia forums there can be some information that might help you...... I feel in limbo at the moment as I was happy to chat in here frequent but now I haven't got it I am banging my head against the wall wondering what is going on!!!!

I am sure the fibo forum will chat with you tell them I sent you there :lol: there is Tess, Linda, Lindy, Di they are all very nice and they are good to chat with also when you are feeling low..... anyway my dear friend as you have two conditions I guess it is hard for you to cope...... fibromyalgia has all sorted relating conditions, such as irritable bowel....etc etc I think I posted this on one of the previous forums :wink:

I am not feeling too good neither was at the doctor today... so he is dealing with the headaches, sinusitis, he is not dealing with my other pains so I an going back next week :cry:

Anyway hun hope you feel a bit better tomorrow xx

Take care x

He ses

Thanks for the info have found the forum.

Hope all goes well with you.

Lizzy

Hi Lizy,

My arms went blue on one side the other day, I was so scared and so went to see my GP, he said it could be circulation problem due to auto-immune activity like Lupus or Rhuematoid arthritis??? It was awful..... my soles of my feet went cold first and blue and so I put my socks on..... and then after my hubby came home from work my daughters and hubby notice one side of my arms were blue, they looked as though it was painted on..... leading into my thumb..... just wondered if you have had this before??? Just waiting to see Specialist as my doctor faxed a letter for my Consultant to see me quicker than June????

I do hope you are doing ok and I hope you have had a good day xx

SES x

Hi, I was diagnosed finally in 1984!!! After 8 years of suffering and being told that everything they tested me for proved negative! It is so frustrating for me to hear that things haven't really changed. I think a positive result only seems to show when you are having a bad flare-up. My diagnosis came about after I'd given birth to my daughter in 1983, 12 weeks prematurely (she is now 26 and perfectly healthy - thank god) but 10 months later I couldn't get out of bed, so was taken to a hospital, that actually specialised in blood disorders and was so relieved when they finally put a name to my constant pain. Steroids pretty much did the trick for me, so I lived with the moon face for several years until I was pregnant with my son, so I had to stop taking them. Immediately I had another flare-up, so was advised to take the steroids anyway. Luckily, my son was born perfect in 1986 and after that I was very slowly weaned off the medication. Apart from a few more years, when sometimes I had a small flare-up, I can happily say that apart from some problems with anemia and the butterfly rash on my face - I have been pain free for about 18 years. I thought I would never be pain-free at the time, so don't give up - this is a ridiculous disease that can leave you as fast as it came, for no apparent reason, so don't give up hope. Good luck xx

Fascinating reading, thank you all for sharing your horrible experiences. I've been unwell for 13 months, diagnosed as Polymyalgia originally by my rheumy, but my gp (and I) have other thoughts.... my muscles and joints are affected, especially my throat muscles, feels like I have a golf ball wedged there most of the time, especially during times of stress. Get small shooting pains down lower arms, had some circulation problems a while back, get abdominal cramps, had a positive ANA - how often should that be checked? It comes and goes does it? Rheumy said not lupus at last visit but it seems this can take months/years to finally show itself clinically. Sleep only about five hours a night... taking diclofenac only. Time will tell...

Does anyone know if it's the doublestranded dna blood result that proves lupus? Along with positive ana?

The avoiding-gluten diet makes sense; celiac disease often sits with other auto-immune disorders I think.

Have a good week all....