At a loss, multiple consultations still no answer...any idea?

@lacy2 I’m thinking about you today. How are you feeling? You say that you’re having a flare—what’s involved with a flare? Did you get bloodwork this morning or did you go to the ER? Becky

Thank you, it's all down to the support I've recieved on this platform. Unfortunately it isn't in person, but that's good as I can have all of my material in front of me. I'm keeping a record of everything that's happened since my initial call.

Hi Becky... well a flare sort of meant my ear area, tinnitus, esp right ear, around the back, down my neck and across back of head were so very painful, more than usual (had been awake since 4am but was normal pain)...til I moved head around in bed, and it was worse when I moved and got up.... had coffee and toast and forced myself to shower and go for the blood tests/urine test ordered by nephrologist couple of months ago (third set of tests before I see her again in 2 weeks) and as at hospital thought I would/should go to emerge as only 3 waiting but my husband sort of said why.... last time you were here (after sort of vertigo and double vision) dr said take tylenol. I really wanted to go to emerge but often five hour wait and as happened started to feel a bit better, home and sat in chair for an hour and got up to move and it came back again and has been on and off .... so when my pain is worse or involves more than one area I just tell husband "having a flare" as he is recouperating himself and our dog has been very ill for three days and he is worn out looking after us both! Thanks for asking and bed all pm and now downstairs in chair and its quite painful - odd thing is I have fecal incontinence and when I go (about six or more times a day) it seems to be making it worse.... just looked up and right side of head started; honestly, i have had many issues for a logn time and today just seemed the icing on the cake, sorry. J.

@lacy2 Have you ever thought about making a poster of your favorite photos? You could then take a photo and shoe us! Becky

...well I do have over a thousand of our dog! J.

You’re correct that at least the labs revealed what you don’t have. Definitely keep insisting that you see a rheumatologist and continue getting more lab work/tests until they find an answer. I’m finding now that apparently even if the lab work and symptoms indicate I have Sjogren’s, I have to go for more tests before I can see a rheumatologist and get treatment! Stay positive and persistent!

At this point, as I see it, you have one thing you really need to do. Have one of the companies do a whole genome analysis on you, sequencing or whatever. Ambrygen.com will usually do a partial free, and its a good place to start. Looks to me that you have at least Gelsolin, and probably FKTN. Classic symptoms for both. And if you are tested positive for FKTN, you also have Gelsolin. I have both since birth.

That's unbelievable. I appreciate the usefulness of blood tests but they are too heavily relied upon. I know it's going to be a struggle as it will be assumed that I'm faking my symptoms or that it's in my head. I won't stop now no matter how annoyed they get by my constant pestering.

I agree, while I appreciate the tests they aren't yielding anything. I was also contemplating a stool sample analysis. I will definitely look into it, cheers.

After speaking with the Dr he suspects that I may have parry romberg syndrome. He's just going to check with his colleagues first before sending for an MRI scan. Not sure it's the news I wanted, but at least it is something.