Confused about what might be wrong... possible systemic autoimmune

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Hi I'm new here and just looking for some understanding from anybody in a similar situation or has more experience than I do.

my history is a little confusing with no real diagnosis off anything.... so far.

I am a 38 year old female and for the past 3-4 year I have suffered fatigued a general feeling off unwell visited doctor several times who has now rectified anemia and low vit d, I have no issues with diabetes, celiac or thyroid apparently either. My CRP levels are good I have no infection inflammation, my blood pressure and cholesterol are normal.

Last year I developed what they think was a virus that completely wiped me out. The main symptoms of this are balance issues, wooziness in head, brain fog, fatigue, tension headaches, titinus, heavy head, motion sickness, problems with fluorescent lighting and computer screens and a general feeling off being unwell.  This has lasted around a year. I am back at work now but still suffer most days with one or all off symptoms but it has eased since the early days when it was 24/7.

ent ruled out ear issues and neurology have ruled out anything neurological although have sent me for MRI to be sure it's not MS.

this is due to my other symptoms, I have numbness in feet periodically, pins and needles and numbness when sitting for any length of time, brain fog and such.

 I have also a possible rosasea/malar butterfly rash on my skin, petacheia rashes on arms (had two in recent weeks)sore legs like fatigue when walking up stairs, fatigue arms when hoovering or doing hair, sore hands when doing fine motor such as cutting with scissors, sore muscles around knees, aching lower back, fatigue continues. Due to this my doctor ordered an ana blood test and an anti DNA test, both came back normal which I was told probably ruledout lupus.

However neutralist suspects it may be systemic autoimmune?

ive also been referred to dermatology for further testing by gp and neurology asked whether I had been referred to rheumatologist.

if it's not lupus what other autoimmune could it be,. I thought they would have also came up in ana.  I'm getting confused and so frustrated as It appears no one can find anything wrong with me. Which is odd because some days I feel far from well.

where do I go now.

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6 Replies

  • Posted

    Hi Tracy,

    i have had my blood work done every six months for the past 5 years. Some days it comes back good, other days it shows Sjogrens as well as other unspecified autoimmune diseases (I have been diagnosed with sjogrens & uctd, although it does not show lupus, my doctor has not completely ruled it out) meaning that even though your blood work does not show positive for autoimmune disease does not mean you do not have it... many of the autoimmune diseases have the same symptoms, so therefore it can be difficult pinpointing which you have if it does not show in your labs, I have had struggles with this since day one... I too have many of the symptoms you are displaying, have you ever been tested for neuropathy? It definitely sounds like neuropathy (I have it, feet, hands, legs & arms hurt, tingle, burn & go numb) you can go into remission with such diseases & feel generally well, then it can hit like a ton a bricks (especially if when you are feeling good & do more then usual. It's like hitting a brick going at a 100) it can be hard finding a good doctor for this disease, my own experience & also those of many... try not be discouraged, it's a long road... take care, any ?'s don't hesitate to ask... ??

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  • Posted

    Consider overlap diseases .

    Consider the following link  

    Also look into seronegative testing


    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      Hi angie1314 I'm sorry but the link has been removed by the moderator so I'm unsure wot it was you were advising. They advise that kind of discussion is done in private messaging??

      As for seronegative testing, this I am aware if but thought it was rare, I highly doubt I'm in the percentage. I'm looking at overlap diseases such as sjrogens due to excessively dry lips and mouth at times. Beginning to think this all might be post viral as the doctors don't seem to think there us anything. The neurologist thought maybe autoimmune and the dermatologist believes rosacea and not lupus although couldn't tell about any of my other rashes. And then only commented on sutoimmune

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    • Posted

      Sorry hit reply there by mistake. Dermatologist only said he would refer due to the above comments about dry mouth although that was after telling me sometimes people never get the answers there looking for and virus can leave symptoms on the body for a while?

      So I'm not getting my hopes up. On a positive I'm feeling quite good so that always helps as it gives you energy for the times you are struggling. Thanks for the feedback .

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    • Posted

      Oh wow im so sorry i didnt realise im not allowed to post links here....

      And iv done it in so many other comments ahhaha...

      The strangest thing is we could all be believing it is impossible for us to be in the minority of seronegative ... Just as we tend to always think only other people die in car crashes ...

      Im not trying to sound negative sorry .

      All im saying is the reason why post here is probably to narrow down our possibilities ..


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    • Posted

      Thank you. It really does help having people to brain storm with as the symptoms can vary so much. I don't take things negative don't worry. I'm just glad to get responses to any questions I may have. I do have one question. I seem to experience sun sensitivity? at times where my skin etc reacts. It's not all the time and it's normally a day or so after a bout of sun exposure. Could this still be sun sensitivity with autoimmune? Or do you think it's more likely being fair skinned and suseptable to sunburn as I have to wear factor 30 or above. I normally experience the itching rashing on the v of my kneck, tops of arms and lower legs but not all at once these are just areas that seem to develop issues if there is going to be.

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