When I finally got a referral to a neurologist to start looking into why I was falling over and erratically losing the use of my right side in the fall of 2015, I expected at least an attempt to take a history and some sort of a physical exam. I especially get stuck on specialists going through the process of getting an actual diagnosis where they:
- consider my history, my test results, and even how I feel by means of some variety of physical exam,
- come up with an idea of what might be going on, and
- work out a treatment protocol that addresses either the cause or the symptoms depending on the diagnosis.
I even expect them to follow up on how I respond and adjust their treatment accordingly.
Instead, practically as soon as I walked in the office I was told that:
- My history was too much
And asked:
- Did I want some gabapenten?
Me, I am thinking that if I have a family history of multiple sclerosis on both sides, dementia on my mother’s side, and a lifelong personal history of multiple neurological insults including head trauma and heavy metal poisoning prior to the lightning strike, that is sufficient reason to look at what might be going on, not cause to dismiss my concerns. And no, I did not want to take some drug prescribed by a doctor that had not bothered to do any sort of intake. So she next informed me that:
- I could not be having the symptoms I was having
That one I could not even respond to. She continued by assuring me that:
- If I did have those symptoms, I could not be having them for the reasons I thought
Now, I am only going to a neurologist, a doctor of Western Medicine, as a last resort, precisely because I do not know why my body is acting the way it is. If I had any surety of the cause, I would be doing something about it, not wasting my time traipsing from doctor to doctor.
- That she would only order an MRI to prove to me that there was nothing wrong
In this case, there were a number of issues, like multiple sclerosis, that I would be delighted to have ruled out. But in general, every time I have heard that one before it has backfired, because I do not go to the doctor unless there is something drastically wrong.
- And that I could not possibly have been hit by lightning, because that was really a big traumatic thing to experience
Duh!!! Again, I could make no response, but I did think that she was the one who would be toasted like marshmallow if she were hit by lightning. She would be burnt black on the outside and reduced to goo in the middle… but then she got my attention again, as, after assuring me that I was a head-case with no actual head problems, she again asked:
- Don’t you want some gabapenten?
Now, I have traumatic brain injuries, compromised liver and kidney function, and a totally idiosyncratic metabolism which means that not only can I have any and every adverse reaction on file, and some that are not, for any given drug, most drugs do not offer me whatever benefit it is they are marketed for. Therefore, I at least wanted to know what wonders the drug was supposed to do for me before I agreed to take it. Her response was that I would have to take it for at least 3-4 months before she could tell if it was making any difference and asked:
- Aren’t you stressed?
I noticed that she was not at all concerned with whether or not I could tell that the drug made any difference and responded that of course I was stressed. I did not add that a great deal of that stress came from dealing with her.
I would expect a neurologist to have some inkling of how traumatic brain injuries affect the way prescription medicines are supposed to work. Especially as, while there is quite a bit of recent research on the subject, this is NOT new information. Way back in the 1970’s a doctor I had gone to see for my chronic pain told me that most modern drugs work by changing the way we perceive the information our body sends our brain, including pain, not because they actually do anything for the underlying problem. Then again, he had originally trained as a pharmacist and was so appalled at how doctors handled drug prescriptions he decided he needed to become one.
Pushing prescriptions in complete disregard of my history practically in the same breath as she dismissed my symptoms did not give me confidence in this neurologist’s doctor act. Refusing the prescription put me on the heretical non-compliant patient list, but I did manage to get out of her office with the order for an MRI despite the confrontational atmosphere. I went to get it as soon as they could schedule me, as I am actually quite prompt and compliant when the doctor’s orders are relevant and constructive.
On a side note for those dealing with heavy metal toxicity, be aware that an MRI can and will stir any metals in your body up regardless of what the technicians tell you. I was assured that my heavy metal poisoning was not a problem, but after the MRI, I leaked battery acid out of my head for a good six weeks. I ended up having to pack my gums with baking soda and calcium carbonate afterwards so I could sleep at night without my gums blistering from the acidity of the fluid draining out. With the alkali baking soda neutralizing the acid, I would wake up with the whole inside of my mouth, and especially the tissue around the fistulas blackened from the metal precipitating out as the PH changed.
After playing telephone tag for a few days trying to find out the results of the MRI, I told the neurologist’s office to just send my files to my primary care physician, as I would not be seeing her again. That got me a very prompt response and what she said was:
- That she was not going to bother to actually look at the MRI because even if there was brain damage it was too late to do anything about it, and oh by the way, I could not possibly have been hit by lightning beca…
At which point I hung up the phone.
The MRI itself has turned out to be useful as a neurologist friend in transition from one job to another looked at it as a favor. He said:
- See where it looks like a sparkler went off in the left neo-cortex? That is what the brain looks like after somebody gets electro-shock therapy or gets hit by lightning.
- See where the vascular voids are draining fluid out of your head? That means your body is healing, and cleaning up any damaged tissue
- And see where the rest of your brain is clean and clear? That means you have no sign of MS or any degenerative brain disease
That information alone was a huge relief. But his prescription was the best I had come across. He said no drugs were needed, that if I wanted to heal I was to:
- Eat well
- Rest well
- Keep moving
- Do what made me happy
- And give myself time to for my body to do its wor
He added I could try taking some (methylated)) B-12 for the heavy metal tremors, which does help. Then I had my long time osteopathic doctor, who specializes in cranial sacral work, take look at it. It turns out that my entire brain is seriously off kilter inside my skull.
- The midline between the right and left lobes is noticeably tilted to the left
- The whole brain is tipped slightly backwards
- It is also rotated slightly counterclockwise
Meaning the whole left side of my brain, including my left eye, AND my cerebellum, my back brain, are a bit squished, compromising the flow of blood and cerebrospinal fluid and their ability to function.
- The deeper the MRI went into the brain, the more pronounced the distortion got.
Meaning all the interesting structures inside the brain like the corpus calosum, the cranial nerves, the ventricles, the pineal and pituitary, the eye sockets, are all a wee bit stressed and out of kilter themselves and that tension and distortion has repercussions even down into the brain stem and spinal cord. Not only was there an apparent cause for my lifelong right side neurological issues and more, my doctor was actually excited by the prospect of fixing it. What he said was:
- See if you can get another MRI in a few months because I want to see the changes after I help you get this straightened out.
So, eventually I got what I needed to know, which was:
- ruling out the really scary degenerative stuff like MS
- having an idea of what actually was going on inside my skull
- and a plan for coping with it
But I had to go outside the system to get it and what it takes to change damage and distortions that have held fast since I was a toddler takes blood, sweat, and plenty of tears as the tissue rips and rebuilds.
And Doctor Take-A-Pill-And-Don’t-Bother-Me? She has zero credibility in my book.
sara annon 