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At a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
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?
Replies to "I’m glad you’ve discussed all of this with your parents. Parents can be of great help!..."
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.
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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