Undiagonosed for 3.5 years, could it be lupus???

[Rnew1999]

Hi all,

I've been suffering with debilitating symptoms for the past and three and a half years, which are upper abdominal pain,extreme nausea and fatigue, weak legs, facial flushing. These symptoms are so bad that they've left me bed bound during this time. I have seen a rhumatologist who was looking for signs of ehlers danlos at the time, and said I didn't have it and signed me off. I noticed these lesions on my head about a year ago,and GP said it will be part of whatever is causing the rest of my symptoms. Just so desperate to find a diagnosis and was w wondering about lupus??? Although my main symptoms are abdominal, could this be a possibility? I had a recent finding of abdominal lymphangiectasia,which wasn't there three years ago when I had barium meal and ultrasounds. Consultant said its common and won't be causing my symptoms.

Any help appreciated,thanks in advance!

[KayHimm]

You might want to ask for a referral to an immunologist. Mast cell activation disorder can cause multi-system symptoms like lupus. What struck me is your flushing.

We all understand your frustration. Nothing worse than not knowing what is wrong.

Xx K

[Rnew1999 in reply to KayHimm]

Thanks so much for your reply,

I have looked into mast cell activation before, along with many other things. I will try to get a referral, though I have quite a few referrals now, all done by myself, I'm waiting on nurogastro, have a cardiologist, gastroenterologist, PoTS specialist. Cardiologist has a possible diagnosis of multi system dysautonomia, but nothing definitive. It's just so frustrating, just thought these lesions might shed some light.

[KayHimm in reply to Rnew1999]

These are super hard illnesses to figure out. I also flush when dysautonomia is very bad. Apparently these nerves talk to each other which give us symptoms that are hard to differentiate. Yes, it takes a lot of specialists.

I guess they are not thinking allergy/mast cell problem? Maybe just mention it. My doctor had not heard of MCAD but knew of mastocytosis which has similar symptoms.

The nerves of the stomach and bowel are related to those in dysautonomia. I have gut issues that are presumed to be related to autonomic dysfunction.

Your doctors are being detectives. They have to consider the possibility that the skin problem is a clue but also know it could be unrelated. I have a flushing rash that many would see as a lupus butterfly. It’s not. Crazy stuff.

Hang in there. I think they will figure it out. If you think of any other symptoms, post because many of us have dysautonomia and may recognize them.

Xx K

[Moon_maiden]

Hi

Sorry to trouble you, hope you aren’t feeling too bad.

Did anything ever get done about the lymphangiectasia?

Many thanks