Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman. If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person. (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)
I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.
I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?
The Mayo Clinic in Rochester. (Photo credit: Wikipedia)
I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid? I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.
I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)
I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no but referred me to a pediatric neurologist, (what?)
DO YOU SEE WHY I NEED HELP?
He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?
Yep, the dreaded (my own personal view) of adding more medicine to my body?
I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.
I have more symptoms but I don’t want to scare you away!
Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.
Please.
Thank you in advance.
Hibernationnow's Blog 
I have 2 friends who have gone to Mayo, neither came back with complete answers, but both came back feeling they had at least some things crossed off and some things answered. I have a friend who went to Emory in Atlanta, and she actually did find an answer, not one she wanted, but the experience was a good one. I felt she had a better experience there than at Mayo.
As you know I’ve been to Duke, since I lived right there. I didn’t find any more answers there. I’ve thought about going to Mayo, the intensity of the trip there scares me. Since everything has to be pushed into such a small time frame it is intense! and with my illnesses the stress from that I think I would be so sick I’m not sure I would make it to half of the appointments….or the rushing to try to get to places to maybe see someone..there’s a lot of that during those trips.
But honey….if you think you need that kind of care, look into it.
Insurance paid for most of their trips. I know both of the people who went to Mayo are not well off, they could not afford to go if insurance didn’t pay. One is a student. She is supposed to go back in December.
I’m sorry I can’t do anything…but I will be your biggest cheerleader if you decide to go to a big clinic and try it out.
I just found out that a clinic close to me is doing a trial about Meniere’s and Tinnitus….I have an appointment with the clinic next week. I doubt I will qualify for the trial since I have cochlear implants and am so advanced in the disease…but if they do that much, they might be able to do something for me?? maybe? cross your fingers. I have been having a heck of a time with my ears for the past couple of months. Yes, I’ve been thinking of going to the “dizzy clinic” in Chicago, or House Ear Clinic in L.A. (as if we could afford those trips.) It’s not just the insurance that is it? It’s the cost of the trip, and everything. But I have thought about it….I’ll post why at some point.
thinking about you. w
LikeLike
Thank you for even trying, Judith. This IS bad. I admit it. You know me well.
LikeLiked by 1 person
Concierge doctors really don’t do what you are looking for – they are just “on call” and have no more expertise than other doctors (in this area at any rate). I’m wondering if places like Mayo or teaching hospitals do sliding fee scales? You’ve probably already looked into that.
I will send an e-mail to the only two doctors I know that MIGHT have suggestions.
I hear the desperation in your post. It is heart-breaking when there are no answers to suffering.
LikeLike