At this point in my story, things had seemed to basically stabilize. I was still experiencing the aforementioned intermittent symptoms. But they weren’t severe and I wasn’t getting any worse. I had given birth to two wonderful children. My OB/GYN is a very competent and caring doctor. Both deliveries ended in c-section, but they went well.
I was able to do what I needed to do for my kids and around the house, etc. I loved being a mother more than I could have ever imagined and I was good at it. I finally had an excellent asthma and allergy specialist, that treated me aggressively enough that I was breathing better than I had in many years. My husband and I were happily planning our third child. Life was good.
Then birth of my third and last child didn’t go at all as planned. The anesthesiologist misplaced my spinal block for my c-section, doing damage to my nerves in the process. He also gave the wrong dosage. (Which the Nurse Anesthetist and the Anesthesiologist had a disagreement about before I was wheeled into the operating room, as she tried to correct him.) I had a traumatic birth experience – to put it mildly. I’ll never forget the way that the Nurse Anesthetist looked at the Anesthesiologist when it was apparent to everyone what he had done. He walked out of the operating room and left her to handle the rest.
Due to the misplaced spinal block, I lost all feeling in my right leg and had no reflexes whatsoever in it for many months. Eventually the nerves in my spine regenerated (as my OB/GYN predicted) and I began to get the feeling and reflexes back in that leg. But by then, the other weird neurological symptoms that I’d been having since immediately following my daughter’s birth, were out-of-hand. They were so out-of-hand that my doctor thought I had a brain tumor.
My balance was terrible. I was tripping constantly. I broke both of my feet several times (due to accidentally running my feet into things while walking). At times speaking was difficult. I was even slurring words at times. I was regularly inhaling food when I tried to eat. The simplest things like walking, talking, breathing, eating, etc. were difficult. I didn’t feel safe to hold my tiny baby girl unless I was sitting down. I was having neuromuscular symptoms all over my body. They were telling me they thought it was a brain tumor, or possibly MS. I was diagnosed with foot drop and peripheral neuropathy. (all more red flags)
I felt like my body was betraying me and falling apart, and nobody knew why. I was going to the specialists they sent me to, and at that time my primary care physician, with whom I got along well with, was an Internal Medicine Specialist (someone with a higher degree than many general physicians) and they still had no clue what was happening to me.
The first neurologist they sent me to, was beyond useless. At the very beginning of the visit he kept asking me if I was “sure” I wasn’t suffering from postpartum depression. (???) He went into long drawn out explanations about how postpartum depression can cause all sorts of odd symptoms and it was nothing to be ashamed of. I said, “I can assure you, I am not depressed, something is wrong with me.” He replied skeptically, “Well, are you happy?”
I remember pausing for a moment, while I tried to find a way to answer him that wasn’t rude.
Then I said something like, “Well….I’m very happy with my baby, my children, my husband and my life, other than the fact that something is WRONG with me. Am I happy about the fact that I’m having all these weird neurological symptoms, and my doctor thinks I might have a brain tumor? NO, of course I’m not happy about that. I want to know what is wrong with me, so that I can hopefully get my life back.”
After that, he dropped it and finally examined me. After examining me, and doing a EMG test, he told me he thought I had MS, but there wasn’t much he could do for me, unless I got better medical coverage. He told me to call him back if I got better health insurance, and in the meantime to go home and try to enjoy my new baby and have the best life that I could. I wanted to kick him on my way out the door.
I remember his office staff (who were very nice ladies), looking at my chart and asking me on my way out if I wanted to schedule a follow-up appointment. And I said, “Why?” And the lady that was present during part of my exam said to me (very sympathetically), “I’m really sorry he didn’t even try to do anything for you. It’s just really hard dealing with your coverage.” I said, “Yeah, tell me about it.” and I thanked her, and told them I’d call them if I changed my mind. But I saw no reason to go back there.
I went to my follow-up with my physician (the Internal Medicine Specialist) and she continued to try to figure out what was wrong. She found some nutritional deficiencies and started working on those. She called me her “medical mystery”, but told me that she was committed to helping me figure it out. My medical coverage was fighting her every step of the way, making everything harder.
I spent approximately a year with my doctors fighting it out with my health coverage trying to get an MRI approved, to find out if I had a brain tumor or MS. We discussed the option of a spinal tap test for MS, but given the fact that I was recovering from nerve damage from a misplaced spinal block for the c-section, nobody was in a hurry to put a needle in my spine again. (Myself included.)
They said that if the spinal tap test for MS was a test that provided a full-proof yes or no, that they would have done it, but given that it is far from being a concrete yes or no test, they didn’t think it was worth taking the risk at that time. And they decided to keep it as an option, depending on what the MRI showed. I was fine with that, but frustrated at the massive delay in getting an MRI. I spent an entire year as a mother of 2 young children and a new baby, wondering if I had a brain tumor in my head.
Finally they got the MRI approved. They checked my spine and my brain. No brain tumor or signs of MS were found. They did find that I’d developed lumbar stenosis in my lower back. Which I wasn’t happy to hear, but it didn’t surprise me either, given all the low back pain that I have.
Eventually, my primary care doctor got so fed up with my medical provider, that she decided to stop accepting patients with my coverage.
I found this out one day when I arrived for my appointment and the secretary told me while I was standing at the front desk, in front of a waiting room full of people. She said something along the lines of…. “Mrs. Norman, the doctor has decided to stop accepting patients with your coverage. So she’s not going to be able to see you today or in the future.” (There was no apology included, not even for the sake of politeness.)
I said, “You’re kidding me?” She said, “No.” (still no apology) I said, “You couldn’t have called me and told me that over the phone?” The lady at the desk had no answer for that. People in the waiting area were staring with their mouths open. Even they were shocked the office had let me show up for an appointment that they had no intention of providing. I didn’t necessarily blame her for bailing on my coverage provider, they were dreadful to deal with. But not calling me? That I couldn’t understand.
We looked at each other for a few awkward seconds and then I calmly said, “So…. you let me come all this way, knowing I’m not feeling well, just to tell me I’m loosing my doctor and won’t be seen?”
Then they asked me to wait a minute and someone called me back to a room. My doctor walked into the exam room and told me that she was sorry, but she just couldn’t deal with my medical coverage provider anymore and she said she had it out with them on the phone and told them she wasn’t going to work with them and accept their patients anymore – effective immediately.
I said, “I’m really sorry to hear that.” She said that her front desk would help me find a new doctor. She didn’t say much else, other than “Good luck.” and “I really hope someone can figure out what is going on for you.” I went to the front desk and they had no recommendations for a new doctor. In fact, they acted surprised that their employer thought they would, and they suggested I look in the phone book.
Yes, they actually said that.
To those girls at the front desk I wasn’t a person. I was just a number. A number with crappy health coverage.
So, I lost my doctor in the midst of all of this. I spent several months trying to get a new one. Nobody wants to take on a new patient with “mystery” symptoms and crappy medical coverage. So it took me awhile to find someone.
I was told that I could call my provider and they could give me a list of new doctors, so I did that – at least a dozen different times. Every time I called the numbers they provided me and every time I was told that they either weren’t accepting new patients (like the coverage said they were) or that they had never accepted my coverage and didn’t know why they kept giving their number out.
I finally found someone who would take a new patient with my coverage, and she was hilarious. She was a little, elderly, foreign woman that spoke EXACTLY like the Soup Nazi character from the TV show Seinfield. (You can follow this link for a short clip of Soup Nazi scenes, if you don’t know who that character is, or if you just want a laugh.)
Her office was ran exactly like that video clip. I am not joking. It was hilarious. Even my own interactions with her were hilarious. I never knew what was going to happen there. She yelled and glared at everyone. Most of her staff seemed somewhat frightened of her.
We have a lot of foreign doctors here. But I’d never met a doctor quite like her before and I didn’t know quite how to take her in the beginning and I almost walked out during one of my first appointments with her. She said something, in her broken English that led me to believe that she thought I wasn’t actually sick. I can’t remember the exact words now, but whatever it was, it sounded like that’s what she meant. So I just stood up and was about to leave. I wasn’t going to waste my time with someone that didn’t believe me, I was too sick and too tired, and too sick and tired for that. So without a word I got up and headed for the door. She said, “Where you going?”
I said, “I’m leaving.”
She glared at me for a bit and said, “You think I don’t believe you?”
I said, “Yes.”
She said (shouting) , “YOU THINK, I THINK ,YOU HYPOCHONDRIAC?”
I said, “Yes.”
She said, “NO NO NO NO!!! NO NO NO! YOU SIT DOWN. YOU SIT DOWN NOW. I NOT THINK YOU HYPOCHONDRIAC. I HAVE HERE ON MY PAD,” (while shaking her notepad in the air) …
“I MAKE LIST, SEE LIST? THIS LIST OF SPECIALIST I AM GOING TO SEND YOU TO. YOU THINK I SEND YOU TO ALL THESE PLACES IF I THINK YOU HYPOCHONDRIAC????? HMMMMMMMM……”
I just stared at her curiously while thinking who is this person and what have I gotten myself into.
She said, “NO NO I NOT. I WOULD LOOK LIKE FOOL! I AM NOT FOOL! IMAGINE I SEND HYPOCHONDRIAC TO NEUROLOGIST. HE THINK I STUPID OLD FOOL. I NOT STUPID OLD FOOL! YOU NOT HYPOCHONDRIAC! NOW YOU SIT AND LET ME SEND YOU WHERE YOU NEED TO GO.”
I smiled and said, “Ok” and I sat back down. :)
She could not do math very well and was regularly confusing milligrams vs grams. And she would yell at me when I tried to gently correct her math, when she was about to mess something of mine up. She would say, “I EDUCATE YOU! YOU DO NOT EDUCATE ME!” And it would take everything I had, trying not to laugh.
But to her credit, she is the one who finally referred me to a neurologist that actually knew something about MG……….
Thank you for reading. I will post the 4th and final installment of The Long Road to Diagnosis tomorrow.
(Click here to read Part Four.)