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

@change25 there's information about it on the mayo clinic site. I don't want to try and explain and not get it right. I have not gotten treatment yet the doctors here don't know much about the antibody that i have so I am trying to get seen or a consult with mayo. And you would know if they ordered a paraneoplastic antibody panel. It might be worth mentioning. Good luck with everything.

No worries. I'll look into it, cheers. That seems to be the issue. As most research and funding will of course go to illnesses with greater incidences. So when dealing with rare diseases few facilities have the means of diagnosing and treating your condition. With that said there's always hope, you're on your way so all the best and I'm sure you'll have what you need in no time.

So glad you’re on a good path to figuring out a solution! I’ve found that looking at one potential diagnosis often leads to others, and of course loads of questions to ask your providers. I’m sure you’ve visited NORD - https://rarediseases.org/rare-diseases/parry-romberg-syndrome/. I’ve found it helpful. Another is Uptodate.com, it requires a subscription, but does have a lot of free info and references. At least seeing specialists leads to more labs and hopefully a diagnosis!

Absolutely, my gut is normally pretty accurate and when I saw PRS something clicked. There's too many coincidences, where I have at least 6/7 of the symptoms. I'm not saying for certain that it is that but I'm fairly positive it is related to it. As I say my general health has improved recently it's just my stomach and from my neck up where the problem persists. So there are some positive though the headaches have worsened. If only I could get down to mayo sooner.
Oh well - not to worry I'm on my way. Hope you are well.

I've finally received a referral to see a neurologist. What's strange is that for last three days my headaches, tingling and sore eyes have vanished. Where now I'm just suffering with a sore throat and stomach. Do you still think it is worth going to discuss what's happened to eliminate anything sinister taking place? Unfortunately, my appearance hasn't changed if anything I've gotten paler. However, I'm relieved that some of my pain has left.

Go! And discuss everything! The neurologist will want to know all that has happened.Emphasize what went on before the stomach and throat problems. Taken by itself, the stomach probs could suggest stress and, of course you have stress ! You’ve been through a lot. Be a good advocate for yourself. Will you be sure to tell us about the meeting with the neurologist? Becky

You're right Becky, thank you for your words of wisdom.

I'm not sure how true it is but I have heard that you can go into remission with autoimmune diseases. Where you may feel normal for a few days only for your symptoms to remerge. I've probably gone from 55% to 75%. Which is a drastic improvement that I'm grateful for, but something clearly isn't right.

Absolutely, I'll probably go quiet for a while as my consultation isn't until next month. If anything drastic changes I'll post an update, all the best.

GO!!!!!!! Don't delay. You must take advantage of every opportunity to see whomever possible, and you must be your own advocate. Becky is so wise and you are going to find out what's causing you these problems. Yes, something may improve and in a few days get worse or something else may happen, you don't know. Find out what is happening, get a solid diagnosis and treatment and get it under control.

Goody! You see a neurologist! Giant step forward. Best and blessings, elizabeth

Absolutely, thank you.
It's peculiar and definitely requires the attention of an expert. I just wasn't sure how they'd react as my symptoms aren't what they were and it's a very small department.

Yes, definitely go! It was my neurologist who ordered the correct labs to lead me to at least a partial diagnosis, and more importantly to a rheumatologist and a hematologist. Without those labs and follow up referrals I’d still be nowhere. I find my symptoms do change and certainly vary in severity.