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

Update: As expected my bloods haven't revealed anything. Unbelievably the Dr stated that they're the best results they've seen for awhile... I've got a call scheduled for this Friday to discuss potential options. Any idea where I should go from here?

@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.

I’m glad you’ve discussed all of this with your parents. Parents can be of great help!
Don’t set your sights solely on Parry Romberg Syndrome. It usually starts in young children. The link I entered is about adult onset (which is rare in an already rare disease).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374961/#sec1title
When you mention Mayo Clinic, are you referring to the affiliate in London? That would be your best bet. As for specialty, let the hospital decide. Have you sent medical records to a hospital? Did they include photos of your face?

I’m glad you’ve discussed all of this with your parents. Parents can be of great help!
Don’t set your sights solely on Parry Romberg Syndrome. It usually starts in young children. The link I entered is about adult onset (which is rare in an already rare disease).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374961/#sec1title
When you mention Mayo Clinic, are you referring to the affiliate in London? That would be your best bet. As for specialty, let the hospital decide. Have you sent medical records to a hospital? Did they include photos of your face?

@change25 have you had a paraneoplastic autoimmune antibody blood test done? I have had a lot of the same symptoms as you and everything was normal except for that panel. Its pretty rare but there is a place in England that knows about it. Am i correct in where you are? I'm sorry if not. Im juat learning how to navigate this site. The blood panel takes 28 days for the results to come back here from mayo clinic they made this panel I think and it's pretty crazy how it affects everything

Congratulations, @change25 . You are going in the right direction and @becsbuddy is so much help, isn't she? Helps me a lot as well. We really don't have to try to make all the choices/decisions, as we are not the experts. Our job, one of them, is to get ourselves to the best expert to help get us to the best expert! You've done that, sir. Then, we decide how to best apply his/her advice, directions.

Did you send your medical records to Mayo? I think you said you did send to the local hospital, but be sure to get all the info to Mayo. Also, when they accepted you as a patient, they sent you information about their procedures? Did they give you a schedule, or the name/specialty of the physician you'll be seeing first? That's the gatekeeper for you at that time, as this person will guide you to tests that will guide then to specialists who will help find your diagnosis and treatment, etc. If Mayo didn't tell you that, I'd call and ask who the doctor is they scheduled you with. Ask. I know, you're a strong, intelligent man and historically, I've found strong, intelligent men often won't ask for help, but you seem stronger and do....so just ask Mayo.

So, probably your first doctor will be an internist or maybe rheumatologist, Six weeks is a long time to wait as you continue to get worse, but it's also only 6 weeks. Did you let them know your situation, tell them your symptoms are worsening? You mentioned the supplements are helping. Might research proper amounts for best benefit w/o harming yourself. Just a thought.

I'm so pleased for you and your parents. I'm thrilled you have them for support. That's worth a fortune right there. Emotional and physical support - you're blessed to have them working with you.

Keep in touch. Blessings to you, your parents and may you get relief soon. elizabeth

No problem, not that I'm aware of. Yes, I'm from England. We have the NHS which is free, although it would be extremely unlikely and difficult to get refferd for such a test. Is it treatable and has your health improved?

@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!