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

Hi @athenalee I’ve certainly heard of Dartmouth Hitchcock med center! And I’m glad you’re seeing a PA. The one I see at UCHealth is fantastic! Have faith and be positive.
Have you got a notebook with all your questions? Ask for a permit to use the portal as a way to communicate with the PA/doctor.
Is someone going with you as a 2nd set of ears?
Good luck! Becky

@change25 That’s awful that the x-rays and medical information weren’t sent ahead. Did yo complete a ‘release of information.’ Things get so complicated these days. But do you still have an appointment at the new hospital?

Thank you Becky. I appreciate your insights! Yes, I’m rereading all the info I downloaded about Sjogren’s, I’ve been putting together my symptoms list, and started my questions list. I’ll definitely request portal communication. I was first diagnosed with PBC by a doctor at Dartmouth Hitchcock and began treatment for liver cirrhosis with her. They have a good team process and I received excellent care.

Since I’ve been through it before I’m familiar with all the hurtles, the waiting, etc. I just wasn’t expecting to go through it all again so soon. And, I’m finding experience doesn’t lessen the anxiety.

I can only assume that the Dr that I was initial with hadn't updated my file. Thankfully, all is well now. I've been notified that I should receive a letter within the next week or so detailing what will take place.

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.

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

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.

@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?

Interesting idea, Becky. Love that thought!!!! This is one of the situations you truly must move and get some knowledeable help from the best. Time is important, I think. What you think, @change25? Do you live far from one of the Mayo facilities? Or Cleveland Clinic? These are the kinds of cases I think they do best.....bless you! elizabeth

@ess77 @becsbuddy Unfortunately that's not possible. Sorry if I didn't make it clear before but I'm from the UK. That's why I stumbled on this site, while the NHS has many positive aspects it also has some pretty deep holes. As I was researching my symptoms mayo clinic popped up. Interestingly, one of their clinics has recently opened up in London. They offer a pretty comprehensive health screening from head to toe. The only issue is based on where it's located (a very wealthy neighbourhood) I can only assume it won't be cheap. Then again there's no better investment than your health. I'll give the hospital a little longer and if nothing comes of it I'll give mayo clinic an email/call. Cheers.