2 years and still with no diagnose!!
Posted , 3 users are following.
I've been struggling for 2 years with some awkward symptoms such as pain in my throat and chest, severe and constant head aches, pain in my face, painful knees, fingers and toes, parestesias. No lab test shows that may be SLE, they are all OK ( ANA came out positive once, I repeated 3 times afterwards and was negative). The doctors can't say anything about it yet, as they say there aren't too many clues to be diagnosed with some kind of disease. Is anyone out there with similar symptoms? thanks and God help us all [/list][/list][/quote][/code]
0 likes, 12 replies
Guest
Posted
Lizy
Posted
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
Guest
Posted
SES
Posted
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
Lizy
Posted
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
SES
Posted
I hope you are having a good day xx
Regards
SES x
Lizy
Posted
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
SES
Posted
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
Lizy
Posted
Thanks for the info have found the forum.
Hope all goes well with you.
Lizzy
SES
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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
Guest
Posted
Guest
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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....