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

That's a good idea!
Yeah, either one of my parents or a friend will tag along.

Hello @change25

If a parent or friend can tag along, ask them to be your note taker. Often at appointments, it will be hard to pick up on every suggestion or thought that the doctor makes. Having a note taker can be very helpful. Looking forward to hearing from you whenever you schedule a Mayo appointment!

After a lengthy discussion my parents and I have agreed that going with mayo is the best move. However, with their current availability and my ability of getting there, the earliest possible appointment is looking like 6 weeks away. In the meantime... my parents have kindly agreed that I can get some private consultations nearby. My gut is telling me that it is more than likely parry romberg; where it is fairly tricky to diagnose. What specialist would be best: Rhumatologist, neurologist, dermatologist or something else? I think it is in my best interest to gather as much information as possible. That way when I get to mayo they'll have a better understanding of what's happening.

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/
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

@change25 Is there a free hospital? or something named similar? I know a few people have gone there and gotten treatment and diagnoses for rare conditions. I am gonna look up a couple things I've stumbled on in my research that sounds like you and see if i can find it again

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

Thank you as always Becky. Agreed, but for whatever reason my gut is really swaying me towards that condition. I'm not ruling anything out though. Yeah, I'm not sure if it works differently to your clinics but when speaking to the Booker they advised me to get as much medical information as I could before seeing a consultant. Private consultations near me are relatively cheap so it makes sense to see a few specialists before heading down.

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?

Absolutely! She's a gem as are you Elizabeth.

Well that's the thing, I'm not sure if they operate differently over here but when initially speaking with the Booker they emphasised the importance of having as much information as possible prior to arriving.

They did yes, it just states that he's a physician with a focus in general medicine.

The last few days have been better. I can't recall anything I've done differently. Perhaps my vitamins and minerals are getting into a normal range.

For sure, I'm extremely blessed in that sense.