Doctors:
I was finished with all of my pre-med classes and was seated to take the MCAT in June of 2011. That was before being told that I was going to have to have surgery for Cushing’s Disease.
I was actually relieved to find out that I had Cushing’s Disease because suddenly everything made sense. The years of illness made sense.
Doctors try to find an answer that fits everything, but I kept having problems that didn’t fit the diagnosis. It started with endometriosis (and of course irritable bowel and fibromyalgia), but that didn’t make sense. Yes, I had pain with my menses, and I had heavy periods, but endometriosis didn’t really explain weight gain, fatigue, low grade fevers, hair loss, aches and pains, etc. I would also have crippling abdominal pain, nausea, vomiting, and blood in my stools.
I will try not to go into all the details, but over the years, I also developed hypertension. They found high uroporphyrins in my urine and blood, so my doctors believed I had acute intermittent porphyria.
Antiphospholipid syndrome explained the several miscarriage, and my elevations in cardiolipins, etc.
Bottom line, Cushing’s Disease explained everything (elevated uroporphyrins and autoimmune issues), so I was excited. I wouldn’t be cured from the autoimmune issues, but removing the pituitary tumor would take care of the Cushing’s disease, and I would feel better and there would be nothing stopping me from becoming a doctor.
I’m still hopeful that I will get into med school, but I’ve had another set back. After the pituitary surgery, I developed hyponatremia. The hospital corrected my sodium levels too quickly and that led to EPM. That was six months ago.
I’m better than where I was, but I’m a long way from MCAT ready. The MCAT is a thinking test. I not only can’t member what I need to remember, but I can’t think as quickly as I once did.
Because I’ve seen many sides of health care (that of the doctors as well as a patient), I feel conflicted regarding what I’ve been through. Life is not black and white.
I am extremely angry at the doctor’s who treated me, but I also feel an understanding about what’s happened.
I think people expect their doctors to be perfect. They get paid a huge amount of money to know what they are doing. Is it too much to expect that they do?
If you every look at a physician’s desk reference, it’s about 8 inches thick, in a font that’s similar to that used in a Bible, on paper that’s practically see through. It’s been said that about 5000 new diseases are discovered EVERY year.
If that’s the case then why do we feel that a single doctor will know and understand every disease and disorder that we might have?
Is it too much to expect?
That said, hyponatremia is a COMMON metabolic disorder. It is the MOST common metabolic disorder. Over 1.5 million people are treated for hyponatremia each year!
So now I feel caught in the middle. Yes, I do expect doctors to know more than the common person. They get paid to know it. At the same time, how will I feel if I’m on the other side of the clipboard, trying to figure out what this person’s tapestry of symptoms means?
Yes, life is not black or white.
Okay, now let me give you some more important information. Let me direct you to a group of doctors that are supposed to know more than most doctors in regards to CPM/EPM. Keep in mind, as I’ve stated before, there aren’t any “true” experts in the field because CPM/EPM is really rare, but these are doctors that have at least heard of it.
My neurologist, Dr. Noor Pirzada. I was referred to him by Jeffrey Amitin. I had the expectation that Dr. Pirzada had treated several patients with CPM/EPM. However, when I’ve questioned him regarding how many patients he’s treated, he won’t give me a direct answer, but will tell me that it’s very rare. I don’t know what that means exactly, but he’s understanding.
Dr. Noor Pirzada, University of Toledo Medical Center,
- Dr. Richard Sterns: University of Rochester School of Medicine, Rochester, NY. (He is an expert in the treatment of hyponatremia and knows a lot about CPM/EPM.
- Dr. Amyn Rojiani: University of South Florida, Tampa, FL.
- Dr. Yeong-Hau Lien: University of Arizona, Tucson, AX
Yeah, I know, that list is really disappointing. If you’ve been treated by an “expert” in CPM/EPM, post it in the comments section.
I will also update it with doctors that I am in the process of contacting. Right now, I have contacted a handful of doctors that have written research papers on CPM/EPM, but I haven’t gotten a lot of information from them as of yet.
Thank you for putting up with my rant on doctors, and I hope this information helps a little bit.
Hyponatremia and Central Pontine Myelinolysis 