Help and advice please

[Georgie-girl]

I am very scared and hoping that you wonderful bunch here with so much knowledge can help me

After years of being treated for sjogrens syndrome, and PMR, it is now believed I don't have either. Bloods never really showed much and nothing was ever completely definitive, just probable, but recently, due to rashes headaches and blood vessel issues, Vasculitis became the front runner for a diagnosis.

However, after watching my mother die of autonomic failure (pseudo obstruction, sudden cardiac death) and having odd and random autonomic neuropathies myself, part of me couldn't help but think there was a connection, even more so when my daughter developed similar autonomic symptoms. Despite all this, sjogrens always seemed to remain the most likely diagnosis and even autonomic evaluation at a leading autonomic hospital 4 years ago turned up nothing but "anxiety".

The last couple of months though have been really tough for me and my daughter with strange symptoms and generally being quite ill yet with nothing showing on our blood tests.

Then this weekend I am rushed into hospital with an irregular and fluttering heart along with 3 day gastroparesis and vomiting. While there it is decided that my nasal and sinus problems are also more than likely autonomic along with my bladder issues, breathing, swallowing and visual problems, headaches, burning skin and ghastly sweats which have all worsened the last few weeks.

So what do they do about it?

An ecg to tell me that the irregular pattern is not AF or anything dangerous, a press on the tummy to tell me it's not hard enough to be worrying, and a check for pancreatitis. They then suggest I get my GP to refer me back to the autonomic unit I've previously been seen at and send me home.

I have emailed PALS at the autonomic hospital to ask if under the circumstances, ( as I am still technically under them having never been discharged, just forgotten,) could they please make me a follow up asap. I will also go to my GP practice tomorrow and have a tough time as my doctor is on holiday, but I will try to get a speedy re referral.

I am scared stiff. Is there anything else I can do?

Does anyone have any idea what this could be?

I have been reading through all the congenital, hereditary autonomic things over and over again and nothing really fits but it has to be something like this for me and my daughter to have similar symptoms. She is under cardio for irregular sinus rhythms and neurology for headaches and neuropathies, ent for dizziness, gastro for bowels, rheumatology for joint pains etc etc. So far just a diagnosis of UCTD and possible early RA.

I know it can take years for a definitive rheumy diagnosis but I'm 12years on and still nothing so I can't help but worry.

Do you think I am being silly and that it is probably just the autoimmune thing causing all these problems?

Thank you

[Suzym2u Moderator Vasculitis UK]

I think it might be helpful to you to contact the Vasculitis UK helpline via this link you can email or telephone vasculitis.org.uk/helpline

[Georgie-girl in reply to Suzym2u]

Thank you Suzi but I did that a few months back on the advice of all you wonderful people here. They gave me the name of the nearest specialist and my GP referred me immediately. He has done testing and is keeping an eye on me but doesn't really think its vasculitis. I have an appointment with him and the ENT clinic in 2 weeks for a biopsy of my nose. Hopefully that should answer some questions.