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

Hello, @change23, and all....I'm so saddened that you're symptoms are increasing. Does your doc have you on any meds for the symptoms until you get to the hospital appt? You don't want to muck up the works by covering up help w/diagnoses, but do need help with survival until you see the hospital folks.

When is your hospital appt? Can you share something about the docs you'll be seeing? What kind of specialty? Is this a teaching hospital? It sounds like you are pleased and like the referral....

BTW: I've found when changing direction like you are with the docs/investigators, I personally went to my present docs and hospitals and took cc of records to the new doctors. Most often at no charge. Sometimes a minimal cost, but worth it to know the new folks have records they need. I don't ask them to be sent, usually. Hand deliver. This also allows me to have cc for myself, which is most helpful for my own information and knowledge and to compare to new tests, etc. Just part of staying proactive, I'm in charge of this body and this journey so I want it to be as smooth as possible, get good answers from legit information and I want to stay on top of what tests and docs are finding, thinking, saying. It's working well for me.

Hope some of what we're saying is helping you....you're so wise to get on this group for support as soon as you developed the problems. You can be proud of yourself. You are the exception.
Bless you and may your have some relief and peace. elizabeth

Hope everyone is well. Just thought I'd give a quick update: I recently visited my Dr due to ongoing stomach issues. After a thourough examination no abnormalities were discovered. However, a full health check did reveal high blood pressure which is being monitored. The vitamins are still combating the fatigue and pain which is good. Although, I've been having pretty significant burning in my nostrils and on the surafce of my nose which is rather painful - along with disrupting my breathing. This has also been accompanied with my eyes becoming extremely red and sore. I'd say this last week my face has continued to deteriorate where more volume has been lost on my right side with a change in pigmentation of the skin. It has gotten to the point where I've had to remove all mirrors from my house to maintain some sanity. I'm a shell of who i used to be, I'm desperately trying to fight it but it is getting harder and harder. I can only hope the hospital will have some answers.

@change25 I understand that nothing is going right for you at this time. I sure wish we could help more. Have you thought about asking your doctor to send your medical records to Mayo Clinic and calling for a consult?

Thank you for your kind words as always Elizabeth.

The problem is that at this current moment they have no idea what the problem is so they can't prescribe me anything.

I have no idea. All I know is that my Dr sent off my current medical files along with a number of photos of my face from before to now. It's a fairly large facility, but it isn't a teaching hospital.

It's bizarre, I've had no facial pain but the atrophy has continued. That's why I removed all mirrors as it was getting too much. It's just a waiting game now, thankfully covid isn't what it. However, the backlog is fairly substantial so who knows when I'll be seen.

Please try to remain positive! I know how frustrating it is not getting answers and waiting endlessly to get seen by a specialist. I’ve found it helpful to keep writing all my doctors, primary and specialists, through the hospital portals. Continuing to remind them your symptoms are getting worse, you need answers, what are the next steps, etc.

If you can, I also sent my symptoms and lab results off to research labs that dealt with autoimmune diseases and asked them what they thought, since I wasn’t getting the attention I needed. I did get a response. I think you said your labs didn’t reveal anything, but with your symptoms you still may be able to research possible diagnosis. I know “Google doctor” doesn’t offer solutions, but it has helped me to research what may be going on.

My best wishes for you to find the help you deserve soon!

Good points, thank you. I've just emailed mayo clinic to get an idea of what the cost may be. It's looking like that will be my next port of call as long as it isn't too expensive. I'll see what I can do with the lab work, there's a decent facility not too far from me that offers more specialised tests.

Hello, our UK friend. Good for you! Positive forward thinking and movement! Now you're being proactive again,,,I'm so impressed with you. I think you're on the right track now. I expect the Mayo folks will be interested in working with you. Hopefully, the cost isn't prohibitive and/or they have assistance available for you. I feel good about this for you...Bless you, elizabeth

I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not responded to my initial inquiry. Within the matter of hours, mayo have already responded. I was asked to provide my medical history so that they can pair me with the correct specialist. I do have some savings...so I can only pray that the cost isn't beyond that.

I'm already impressed. I've contacted multiple private healthcare providers and still to this day they've not responded to my initial inquiry. Within the matter of hours, mayo have already responded. I was asked to provide my medical history so that they can pair me with the correct specialist. I do have some savings...so I can only pray that the cost isn't beyond that.