WARNING LOOONG POST!!
As with many of you, I'm frustrated with the medical system in my journey to search for a diagnosis.
I'm lucky in that my job (software) allows me to work remotely, otherwise I would be out 4 months of work by now.
I hope that some of this information is helpful for people, but this is mostly for me to vent and I hope that's ok.
I've done hours and hours and hours of research examining many different diseases. I feel like I've looked at more brain and spine MRIs than my PCP ever has at this point.
In another part of this forum I mentioned that doctors have been a huge let-down for me; between misdiagnoses and apathy, I'm defeated. Most of them have 15-30 minutes to analyze me and make a diagnosis -
which for those of us not presenting in a clinically typical way - is nowhere near enough time, so we're constantly kept in limbo while our lives deteriorate, we lose our jobs and
our families suffer. It's pure hell.
This is unrealistic I suppose, but what I really need is for a neurologist or team of doctors to sit down and really map out the symptoms against atypical presentations of certain diseases.
I feel informed enough to have an intelligent conversation with a neurologist in how the nervous system manifests illness, but I never get that opportunity.
Here's what I understand so far and please teach me if i'm way off on some of these... neurological diseases can be placed into several high level buckets:
1) Cancers and Tumors (Glioma, Lymphoma, Schwannoma)
2) Vascular (Strokes and Transient Ischemic Attacks)
3) Demyelinating Autoimmune Diseases/Connective Tissue Diseases (MS, Rheumatoid Arthritis, Ehlers-Danlos, Sjogren's, Lupus)
4) Chemical imbalances (e.g. dopamine in Parkinsonism)
5) Trauma (Car Accident, Contact Sports)
6) Mineral Deficiencies (Vitamin D, Vitamin B12)
7) Degenerative (Motor Neuron Disease/ALS and related disorders)
8) Structural (Chiari Malformation, CSF Leaks, Birth Defects)
I think it's important to hone in on which of these buckets has a higher probability of holding the answer for me and to work with a neurologist to rule out the easier ones first.
Trauma is an easy one and mineral deficiencies is relatively simple too with blood tests. I know I'm vitamin D deficient and have been on supplements for it since 2013. I'll need to retest this.
Cancers are tough, but I believe cancers (and especially the malignant variety) spreads rather quickly and once symptomatic, it's all downhill from there. Doesn't fit the bill for me.
Tumors can usually be seen on an MRI and if not, I would expect it to only impact limited areas of the brain. E.g. balance is intact, but speech is affected.
My symptoms cross many different functional areas of the brain.
Chemical imbalances are also tough if i'm not mistaken, but in the case of parkinsonism, it typically takes on the form of dystonia and rigidity.
I don't have these, though I do have spasticity.
Degenerative diseases can be excluded with normal EMG/Nerve Conduction studies, especially if the Central Nervous System components are not involved.
My tests came back normal.
Vascular issues like stroke will appear on an MRI and at the level where they cause significant symptoms, I have a hard time believing it can escape diagnosis. TIAs i'm not sure, but with TIAs it's a ticking time bomb so it will be a stroke soon if it doesn't resolve. Areas of oxygen deprivation are usually present on an MRI.
So far no indication of this as it's spanned several years and the most recent "flare" several months.
Structural can be tough to diagnose. Birth defects are usually present on imaging. Chiari Malformation is one of the easier ones, but CSF leaks are tough to find if they're not being actively looked for.
I think this is the most likely explanation as I DO have structural defects in my cervical and thoracic spine. I believe I have a CSF leak at T8-T9. See my medical history for more info.
I saw an orthopedic physician that was very impressed with my knowledge and ability to read MRIs. The physician does see a visibly suspicious area at the T8-T9 area that could be a CSF leak and has referred me to a teaching hospital.
Demyelinating/Connective Tissue diseases seem to be THE royal pain to diagnose. Prone to false positives/negatives, very similar in presentation to one another. Size, shape, or presence of lesions are all determined by level of demyelation and worse - not always indicative of the severity.
I have no lesions (yet). I do have heat tolerance problems, the trigeminal neuralgia, nystagmus, and oscillopsia which is highly suspicious of MS and related disorders.
My symptoms are paroxysmal, affecting many brain regions including word-finding abilities and short term memory. I have had distinguishable episodes that can be classified as clinical "remission" and "relapse".
My full medically (and a bit of not-so-medical) relevant history:
April 2013 - complain to PCP about short term memory loss, fatigue, and feeling "off". Blood tests ordered, everything normal except Vitamin D levels were deficient.
Started taking Vitamin D 5000IU pills every day since.
July 2013 - While doing deadlifts in the gym, I messed up on my form while pulling really heavy. I hear a "pop" in my neck and immediately get nauseous.
Decided to stop doing deadlifts for a while as I was having trouble keeping form and the pop made me nervous.
September 2013 - I noticed whenever I was tired or after eating a meal, I would get an odd clammy-skin sensation and a feeling once again like things were "off".
Wondered if it had anything to do with the "pop" in my neck a couple months prior.
There was a week where my elbow felt gross and was warm to the touch. Went to urgent care as I was worried about infection, they suspected MRSA/staph and prescribed ciprofloxacin. Elbow issue went away.
November 2013 through January 2014 (mystery illness from hell) - Came down with a mild case of stomach flu (no vomiting). Recovered, but after a week I started deteriorating.
Super intense nausea and dizziness, couldn't eat or drink anything.
Lost 20lb due to this mystery illness, one nurse thought I had cancer! Multiple blood tests came back normal except my Bilirubin was slightly elevated.
I started suspecting the ciprofloxacin from September as a potential cause.
GERD is suspected by doctor, put on prilosec which did absolutely nothing.
Colonoscopy and endoscopy found nothing.
In January tried eating something really oily and BAM, treated! Nausea becomes very intermittent, usually striking at night when fatigued, but otherwise I was getting back to normal.
February 2014 - I feel off, every now and then I get what feels like numbness in my hands, attribute it to sleeping position. Sometimes at night I wake up and my body feels like it's shaking (tremor).
Strange earthquake sensations when I wake up at night to use the bathroom. I write it off as sleepiness or sleeping at a bad angle.
April 2014 - Nausea still persists but less and less each day. I finally see a Gastro doctor and explain my mystery illness and recovery.
Gastro has nuclear test on gallbladder performed, finds my ejection fraction rate is low - 34%. Suggests if things get worse to remove my gallbladder. Things got better thankfully.
July 2014 - House fire started by next door neighbor. Me, wife, and 3 month old baby barely make it out before flames engulf the house. Literally lose everything we own. This becomes relevant later.
August 2014 - Start feeling the earthquake sensations again. A wake up at night convinced there is an earthquake, my wife thinks I'm going nuts or having bad dreams.
I blame it on anxiety/PTSD from the house fire.
September 2014 - Numbness and tingling in arms getting worse. Burning sensation in the arms. Pain behind my eyes.
I see an urgent care doctor who tells me I probably have a slipped disc in my neck and a sinus infection. Suggests I "see somebody" about my neck. Prescribes sudafed, but pain behind the eyes is not affected by the meds.
Pain eventually subsides after a couple of weeks.
October 2014 (First "flare" of major symptoms) - Numbness getting worse, is now in my legs. Everything is twitching, especially in my left foot - 24/7 twitching.
Earthquake sensation now occurring during the day. I get feelings like i'm on a boat like the ground is moving.
Wake up in the middle of the night and my legs don't work right - I feel like i'm walking on stilts, feel very weak and off balance.
Next night wake up with my vision twitching to the left constantly (two years later found out it's called nystagmus); fear and anxiety really kick in.
The "Sandra Bullock Vertigo" episodes start; named after the scene in the movie "Gravity" where she is spinning every-which way in space.
I have no real label for it other than vertigo. For a brief second, my body doesn't know where it is in space, as if I've been flung into an abyss. It's like the ground has disappeared from beneath me and i'm falling upwards, downwards, and sideways all at the same time.
"Sandra Bullock Vertigo" continues to strike at random under any condition (especially at work, ugh), always when i'm sitting. I blame it on anxiety from my house fire in July.
Muscles spasms from hell. Everything is stiff all the time and I have huge knots in nearly every muscle. My calves have near constant charlie-horse cramps. My trapezius is one giant endless spasm.
November 2014 - Electric shocks, pins and needles start taking hold. I get an electric shock in my left eye - hurts really bad. A black spot forms in my vision, but it's moving around like a floater so I think nothing of it. Black spot never goes away.
Stare at the ceiling one night and ... huh that's weird, why is the ceiling wobbling?!
I see a new PCP, she refers me to a neurologist "to rule out MS" - two months out UGHHH!
PCP orders me to get my eyes checked and see an ENT for my vertigo in the meantime.
Eye Dr says i'm fine and suspects a nerve issue, asks me to see a neurologist "to rule out MS"
ENT says i'm fine and need to see a neurologist "to rule out MS" (I now understand this is a legal way for doctors to suggest "you might have MS")
December 2014 - Tremor takes hold of my right index finger. Happens at rest and movement. Vertigo, boat feeling, and night problems still persistent.
My wobbly vision is more noticeable. If I look at objects, they jerk/bounce both vertically and horizontally. (Two years later I searched and found this is called oscillopsia).
I go to write a check, as i'm writing, my eyes bounce extremely fast from side to side and i'm disoriented for a second - I'm frightened (turns out it's another form of my nystagmus).
In low light conditions, I'm "hallucinating" that shadows are animals. Thought there was a raccoon in my bedroom or stray cat running in the living room floor. Nope, just weird lighting/shadows. What the heck?!
January - March 2015 - Finally see a neurologist. This guy sucks, he constantly complains about his job and never listens to me, thinks I "look fine" but orders tests anyway.
Undergo my first brain MRI - clean, no lesions.
More blood tests, all come back normal.
Scary symptoms are now gone, I'm only left with some numbness, a permanent twitch in my left foot, and mild oscillopsia.
April 2015 - I beg to have a cervical MRI done because the neurologist is dumbfounded (and a rude jerk!). Minor disc bulges are noted.
August 2015 - Vertigo, numbness and balance problems come back. Tremor in index finger more frequent. Go back to jerk neurologist and luckily my tremor presented right in front of him.
"You have a tremor!" he exclaims. GREAT OBSERVATION EINSTEIN, I've been saying it for months! He stabs me with a huge nerve monitoring needle and says "yup, it's a tremor". No follow up is given.
I call back to inquire about a follow up - "Dr SoAndSo doesn't think you have a neurological problem at this time". WHAAAAAAAAAAAAAAAT!!!!!!!!!! He just said I had a tremor!!
September 2015 - REALLY ANGRY now. I arrange for a visit to a neurosurgeon because I suspect the "neck pop" from 2013 is to blame and my disc bulges are not minor.
I've developed a weird problem where it feels like my heart is ballooning and about to burst out of my chest, but it's very intermittent.
Neurosurgeon is an even bigger jerk, gives me difficulty for wasting his time. I ask if I can start lifting weights again as I've avoided it for a few years due to nervousness with my neck.
He says I can lift weights all I want with zero restrictions as my disc bulges are minor.
I started lifting again.
2016 through 2017 (Remission???) - I've become a fitness nut. I'm in the best shape of my life. Single minor attacks of vertigo maybe once every two months throughout this time period.
Numbness and tingling are very intermittent, only noticed when i'm really tired.
Only permanent issue is left foot twitch, black spot in vision, and oscillopsia.
Every now and then I get a weightlifting injury/sprain and stop for 1-3 weeks, during these periods my numbness, tingling, stiffness, spasticity, and vertigo return.
Once I start working out again, things subside. Hmmm interesting pattern...
November 2017 - Heart "ballooning" problem becomes more frequent. Go to urgent care, EKG is done but clean and I'm told it's an esophagus spasm.
I start feeling a deep pain in my thoracic spine, but after popping some Ibuprofen and foam rolling, I feel fine again so I ignore it. This happens two more times.
Third time - uh oh, something is seriously wrong - the pain is NOT going away. I think I herniated a disc!
Go to urgent care, they examine me and tell me it must be a muscle problem. I insist it's a herniated disc, they scoff and have me get an XRAY.
XRAY comes back normal, they tell me to go to Physical Therapy. No MRI!
December 2017 - PT doctor tests my strength - my entire left side is severely weak. I never noticed. She requests an MRI from the urgent care doctor despite their earlier reluctance.
MRI results in - moderate disc herniation at T8-T9. HAH! TAKE THAT YOU DUMB DOCTOR!
Meantime I can't sit for more than 30 minutes without excruciating pain.
Neurological problems start manifesting. First starts with Allodynia in my legs - I feel nerve pain everytime my pants touch my legs or with certain steps.
Numbness and tingling problems come back since I haven't exercised in weeks. Vertigo is creeping in.
I have a strange "pulling" sensation like a magnet is pulling me to the side.
Three nights in a row I have the most painful experience in my life. Were it not for my thoracic herniation, I would have called 911 thinking I was having a heart attack.
It starts with a band like sensation that wraps from my mid-back around my ribs and then tightens like a screwdriver until it feels like my ribs are going to be crushed and heart about to explode.
HORRIBLE INTENSE PAIN OH GOD WHY?!?! (side note: people describe the "MS HUG" the same way - although I wasn't familiar with that term until recently).
January 2018 (Worst time of my life!! Relapse???) - Physical Therapy is making things worse? Desperate for help, I reach out to a spine surgeon office. They take their sweet time getting me a first appt.
Sitting at work doing my thing and - OH MY GOD WHAT THE HELL IS HAPPENING TO ME - the worst episode of vertigo yet.
I have a screaming tinnitus, photophobia, and the magnetic tugging sensation is 10x more powerful. Is this permanent?!?! Go to ER and they give me xanax, send me home. Xanax does NOTHING.
Finally see the spine surgeon doctors and they conduct a thorough examination. My reflexes are absent in my left arm, and hyperactive in my right foot. They can tell something is very wrong.
Spine doctors tell me I need to see a neurologist but they want to order a neck MRI (great idea!).
Neck MRI is performed, I ask for a CD and review it - I immediately see my neck is much worse than in 2015, and spinal cord compression is present.
I get the MRI results in the mail and it only notes mild disc bulges - I notice it's the same radiologist from 2015. Start getting angry and suspecting incompetence.
A week goes by and I see the spine doctor for follow up, "the MRI report says your neck is fine".
I ask to review the MRI together - I never mention that I already saw compression. As we're flipping through the stack, the doctor pauses then promptly leaves the room to consult the head surgeon who schedules a next day follow up to discuss surgery.
I see the head surgeon and he wants to do an artificial disc replacement at C5-C7, we just need to wait for insurance approval.
The next day my symptoms are at the worst they've ever been, I can't walk right and bumping into walls. Handwriting is not readable. I call the spine center and they say go to the ER.
Meet the head surgeon's colleague in ER, he tells me I need surgery soon due to cervical myelopathy or end up paralyzed. Unfortunately he's unfamiliar with the artificial disc replacement process
and my surgeon is out of town - he wants to do an ACDF procedure (fusion) at the two levels. Feeling like I have no choice, I agreed.
Surgeon says he will perform surgery on the next day since I ate already and need 12 hours no food or water. He says he's going to pump me full of the strongest steroids to reduce inflammation.
Surgery went (mostly) well, I wake up and NO SYMPTOMS!!!!!
The next 24 hours are awesome - no symptoms other than weakness which makes sense given I was just put under for 5 hours.
At the 48 hour mark I notice the twitch in my foot is back - uh oh. I go into denial and think it's fine. My surgeon reassures me that it will take many weeks for the nerves to calm down
from the inflammation. I start thinking what if the strong steroids got rid of my symptoms and it wasn't the surgery???
Day 3 I'm discharged from the hospital. I go home and attempt to use the restroom. I noticed I have saddle numbness, so I call the spine center and they say go back to the ER.
At the ER I'm examined from head to toe and discover my entire left side is numb!!!
MRI of head, lumbar, and thoracic spine are conducted. T8-T9 herniation still there, L5-S1 disc is bulging. No lesions on brain MRI. I'm sent home.
February 2018 - For the next several weeks post-op, many of my symptoms start returning but no vertigo. I've seen my surgeon for a follow up and he's convinced this is an
issue with the central nervous system as everything above my neck (tinnitus, facial numbness/pins and needles) can't be explained by the spinal cord compression or surgery I had.
I explain to them that everything I do seems to have a mechanical trigger.
For example, about 5-15 minutes after a shower, I start getting fatigue, loss of balance, and heavy tinnitus and loss of proprioception (I can see my arms and legs, but can't FEEL they are there, especially with eyes closed).
I have another electrical shock attack on my left eye. I remember the first one from many years ago so clearly, this one was just as painful. My right eye goes blurry for a few hours.
Repeated calls and appointments with spine center result in no answers - they want me to maintain my upcoming neurology appointment "to rule out MS". Crap. Here we go again.
March 2018 - It's a Friday and I'm actually excited to see the neurologist (an MS specialist) for answers. Neurologist comes in, asks about my symptoms and proceeds to doing a nerve conduction exam.
Exam is painful, but results are normal. I told her that multiple brain MRIs show I have no lesions, so I don't think I have MS and it has to be my spine.
Doctor says "but your symptoms indicate a central nervous system problem, not spinal - I'll have to check your MRIs again and possibly order a spinal tap".
I called 4 days later - Monday - to ask about the spinal tap and follow up. I was told the neurologist had retired. I waited MONTHS to see the neurologist and the doctor RETIRED?!?!
How could a neuro retire without letting their patients know? Why even take a new patient?
I ask to see a new neuro - they can't, they are transferring to a new hospital and the medical system is down. "Call back next week". It's been two weeks and I've called many times with no luck.
WELCOME TO LIMBO
A new symptom appears - for some reason, stroking my face sometimes triggers intense and very painful nerve pain in my jaws. I later find out this is trigeminal neuralgia.
Another strange symptom - sometimes it feels like a glove is shrouding my right hand.
Desperate, I begin the process of self-diagnosing once again. I start writing down my symptoms and their triggers. I noticed that my symptoms happening after a shower might not be
entirely mechanical, but it could be heat intolerance. Overheating from alcohol or sitting too long in the sun also seems to trigger my symptoms. I also notice that my thoracic spine pain
is always involved right before I have an exacerbation of symptoms.
Looking over my MRIs obsessively, I noticed something is not quite right with my thoracic spine. After much research I suspect a CSF leak at the site of my disc herniation. Schedule appointment with PCP to talk about this.
The things in bold are what stand out to me. They make me think "what if this really is MS?". I have no idea and to tell the truth I don't care if it is; I just want a proper diagnosis on my condition so I can be better prepared and not look like an idiot when i'm telling people i'm not drunk - I have neurological problems!!
As with many of you, I'm frustrated with the medical system in my journey to search for a diagnosis.
I'm lucky in that my job (software) allows me to work remotely, otherwise I would be out 4 months of work by now.
I hope that some of this information is helpful for people, but this is mostly for me to vent and I hope that's ok.
I've done hours and hours and hours of research examining many different diseases. I feel like I've looked at more brain and spine MRIs than my PCP ever has at this point.
In another part of this forum I mentioned that doctors have been a huge let-down for me; between misdiagnoses and apathy, I'm defeated. Most of them have 15-30 minutes to analyze me and make a diagnosis -
which for those of us not presenting in a clinically typical way - is nowhere near enough time, so we're constantly kept in limbo while our lives deteriorate, we lose our jobs and
our families suffer. It's pure hell.
This is unrealistic I suppose, but what I really need is for a neurologist or team of doctors to sit down and really map out the symptoms against atypical presentations of certain diseases.
I feel informed enough to have an intelligent conversation with a neurologist in how the nervous system manifests illness, but I never get that opportunity.
Here's what I understand so far and please teach me if i'm way off on some of these... neurological diseases can be placed into several high level buckets:
1) Cancers and Tumors (Glioma, Lymphoma, Schwannoma)
2) Vascular (Strokes and Transient Ischemic Attacks)
3) Demyelinating Autoimmune Diseases/Connective Tissue Diseases (MS, Rheumatoid Arthritis, Ehlers-Danlos, Sjogren's, Lupus)
4) Chemical imbalances (e.g. dopamine in Parkinsonism)
5) Trauma (Car Accident, Contact Sports)
6) Mineral Deficiencies (Vitamin D, Vitamin B12)
7) Degenerative (Motor Neuron Disease/ALS and related disorders)
8) Structural (Chiari Malformation, CSF Leaks, Birth Defects)
I think it's important to hone in on which of these buckets has a higher probability of holding the answer for me and to work with a neurologist to rule out the easier ones first.
Trauma is an easy one and mineral deficiencies is relatively simple too with blood tests. I know I'm vitamin D deficient and have been on supplements for it since 2013. I'll need to retest this.
Cancers are tough, but I believe cancers (and especially the malignant variety) spreads rather quickly and once symptomatic, it's all downhill from there. Doesn't fit the bill for me.
Tumors can usually be seen on an MRI and if not, I would expect it to only impact limited areas of the brain. E.g. balance is intact, but speech is affected.
My symptoms cross many different functional areas of the brain.
Chemical imbalances are also tough if i'm not mistaken, but in the case of parkinsonism, it typically takes on the form of dystonia and rigidity.
I don't have these, though I do have spasticity.
Degenerative diseases can be excluded with normal EMG/Nerve Conduction studies, especially if the Central Nervous System components are not involved.
My tests came back normal.
Vascular issues like stroke will appear on an MRI and at the level where they cause significant symptoms, I have a hard time believing it can escape diagnosis. TIAs i'm not sure, but with TIAs it's a ticking time bomb so it will be a stroke soon if it doesn't resolve. Areas of oxygen deprivation are usually present on an MRI.
So far no indication of this as it's spanned several years and the most recent "flare" several months.
Structural can be tough to diagnose. Birth defects are usually present on imaging. Chiari Malformation is one of the easier ones, but CSF leaks are tough to find if they're not being actively looked for.
I think this is the most likely explanation as I DO have structural defects in my cervical and thoracic spine. I believe I have a CSF leak at T8-T9. See my medical history for more info.
I saw an orthopedic physician that was very impressed with my knowledge and ability to read MRIs. The physician does see a visibly suspicious area at the T8-T9 area that could be a CSF leak and has referred me to a teaching hospital.
Demyelinating/Connective Tissue diseases seem to be THE royal pain to diagnose. Prone to false positives/negatives, very similar in presentation to one another. Size, shape, or presence of lesions are all determined by level of demyelation and worse - not always indicative of the severity.
I have no lesions (yet). I do have heat tolerance problems, the trigeminal neuralgia, nystagmus, and oscillopsia which is highly suspicious of MS and related disorders.
My symptoms are paroxysmal, affecting many brain regions including word-finding abilities and short term memory. I have had distinguishable episodes that can be classified as clinical "remission" and "relapse".
My full medically (and a bit of not-so-medical) relevant history:
April 2013 - complain to PCP about short term memory loss, fatigue, and feeling "off". Blood tests ordered, everything normal except Vitamin D levels were deficient.
Started taking Vitamin D 5000IU pills every day since.
July 2013 - While doing deadlifts in the gym, I messed up on my form while pulling really heavy. I hear a "pop" in my neck and immediately get nauseous.
Decided to stop doing deadlifts for a while as I was having trouble keeping form and the pop made me nervous.
September 2013 - I noticed whenever I was tired or after eating a meal, I would get an odd clammy-skin sensation and a feeling once again like things were "off".
Wondered if it had anything to do with the "pop" in my neck a couple months prior.
There was a week where my elbow felt gross and was warm to the touch. Went to urgent care as I was worried about infection, they suspected MRSA/staph and prescribed ciprofloxacin. Elbow issue went away.
November 2013 through January 2014 (mystery illness from hell) - Came down with a mild case of stomach flu (no vomiting). Recovered, but after a week I started deteriorating.
Super intense nausea and dizziness, couldn't eat or drink anything.
Lost 20lb due to this mystery illness, one nurse thought I had cancer! Multiple blood tests came back normal except my Bilirubin was slightly elevated.
I started suspecting the ciprofloxacin from September as a potential cause.
GERD is suspected by doctor, put on prilosec which did absolutely nothing.
Colonoscopy and endoscopy found nothing.
In January tried eating something really oily and BAM, treated! Nausea becomes very intermittent, usually striking at night when fatigued, but otherwise I was getting back to normal.
February 2014 - I feel off, every now and then I get what feels like numbness in my hands, attribute it to sleeping position. Sometimes at night I wake up and my body feels like it's shaking (tremor).
Strange earthquake sensations when I wake up at night to use the bathroom. I write it off as sleepiness or sleeping at a bad angle.
April 2014 - Nausea still persists but less and less each day. I finally see a Gastro doctor and explain my mystery illness and recovery.
Gastro has nuclear test on gallbladder performed, finds my ejection fraction rate is low - 34%. Suggests if things get worse to remove my gallbladder. Things got better thankfully.
July 2014 - House fire started by next door neighbor. Me, wife, and 3 month old baby barely make it out before flames engulf the house. Literally lose everything we own. This becomes relevant later.
August 2014 - Start feeling the earthquake sensations again. A wake up at night convinced there is an earthquake, my wife thinks I'm going nuts or having bad dreams.
I blame it on anxiety/PTSD from the house fire.
September 2014 - Numbness and tingling in arms getting worse. Burning sensation in the arms. Pain behind my eyes.
I see an urgent care doctor who tells me I probably have a slipped disc in my neck and a sinus infection. Suggests I "see somebody" about my neck. Prescribes sudafed, but pain behind the eyes is not affected by the meds.
Pain eventually subsides after a couple of weeks.
October 2014 (First "flare" of major symptoms) - Numbness getting worse, is now in my legs. Everything is twitching, especially in my left foot - 24/7 twitching.
Earthquake sensation now occurring during the day. I get feelings like i'm on a boat like the ground is moving.
Wake up in the middle of the night and my legs don't work right - I feel like i'm walking on stilts, feel very weak and off balance.
Next night wake up with my vision twitching to the left constantly (two years later found out it's called nystagmus); fear and anxiety really kick in.
The "Sandra Bullock Vertigo" episodes start; named after the scene in the movie "Gravity" where she is spinning every-which way in space.
I have no real label for it other than vertigo. For a brief second, my body doesn't know where it is in space, as if I've been flung into an abyss. It's like the ground has disappeared from beneath me and i'm falling upwards, downwards, and sideways all at the same time.
"Sandra Bullock Vertigo" continues to strike at random under any condition (especially at work, ugh), always when i'm sitting. I blame it on anxiety from my house fire in July.
Muscles spasms from hell. Everything is stiff all the time and I have huge knots in nearly every muscle. My calves have near constant charlie-horse cramps. My trapezius is one giant endless spasm.
November 2014 - Electric shocks, pins and needles start taking hold. I get an electric shock in my left eye - hurts really bad. A black spot forms in my vision, but it's moving around like a floater so I think nothing of it. Black spot never goes away.
Stare at the ceiling one night and ... huh that's weird, why is the ceiling wobbling?!
I see a new PCP, she refers me to a neurologist "to rule out MS" - two months out UGHHH!
PCP orders me to get my eyes checked and see an ENT for my vertigo in the meantime.
Eye Dr says i'm fine and suspects a nerve issue, asks me to see a neurologist "to rule out MS"
ENT says i'm fine and need to see a neurologist "to rule out MS" (I now understand this is a legal way for doctors to suggest "you might have MS")
December 2014 - Tremor takes hold of my right index finger. Happens at rest and movement. Vertigo, boat feeling, and night problems still persistent.
My wobbly vision is more noticeable. If I look at objects, they jerk/bounce both vertically and horizontally. (Two years later I searched and found this is called oscillopsia).
I go to write a check, as i'm writing, my eyes bounce extremely fast from side to side and i'm disoriented for a second - I'm frightened (turns out it's another form of my nystagmus).
In low light conditions, I'm "hallucinating" that shadows are animals. Thought there was a raccoon in my bedroom or stray cat running in the living room floor. Nope, just weird lighting/shadows. What the heck?!
January - March 2015 - Finally see a neurologist. This guy sucks, he constantly complains about his job and never listens to me, thinks I "look fine" but orders tests anyway.
Undergo my first brain MRI - clean, no lesions.
More blood tests, all come back normal.
Scary symptoms are now gone, I'm only left with some numbness, a permanent twitch in my left foot, and mild oscillopsia.
April 2015 - I beg to have a cervical MRI done because the neurologist is dumbfounded (and a rude jerk!). Minor disc bulges are noted.
August 2015 - Vertigo, numbness and balance problems come back. Tremor in index finger more frequent. Go back to jerk neurologist and luckily my tremor presented right in front of him.
"You have a tremor!" he exclaims. GREAT OBSERVATION EINSTEIN, I've been saying it for months! He stabs me with a huge nerve monitoring needle and says "yup, it's a tremor". No follow up is given.
I call back to inquire about a follow up - "Dr SoAndSo doesn't think you have a neurological problem at this time". WHAAAAAAAAAAAAAAAT!!!!!!!!!! He just said I had a tremor!!
September 2015 - REALLY ANGRY now. I arrange for a visit to a neurosurgeon because I suspect the "neck pop" from 2013 is to blame and my disc bulges are not minor.
I've developed a weird problem where it feels like my heart is ballooning and about to burst out of my chest, but it's very intermittent.
Neurosurgeon is an even bigger jerk, gives me difficulty for wasting his time. I ask if I can start lifting weights again as I've avoided it for a few years due to nervousness with my neck.
He says I can lift weights all I want with zero restrictions as my disc bulges are minor.
I started lifting again.
2016 through 2017 (Remission???) - I've become a fitness nut. I'm in the best shape of my life. Single minor attacks of vertigo maybe once every two months throughout this time period.
Numbness and tingling are very intermittent, only noticed when i'm really tired.
Only permanent issue is left foot twitch, black spot in vision, and oscillopsia.
Every now and then I get a weightlifting injury/sprain and stop for 1-3 weeks, during these periods my numbness, tingling, stiffness, spasticity, and vertigo return.
Once I start working out again, things subside. Hmmm interesting pattern...
November 2017 - Heart "ballooning" problem becomes more frequent. Go to urgent care, EKG is done but clean and I'm told it's an esophagus spasm.
I start feeling a deep pain in my thoracic spine, but after popping some Ibuprofen and foam rolling, I feel fine again so I ignore it. This happens two more times.
Third time - uh oh, something is seriously wrong - the pain is NOT going away. I think I herniated a disc!
Go to urgent care, they examine me and tell me it must be a muscle problem. I insist it's a herniated disc, they scoff and have me get an XRAY.
XRAY comes back normal, they tell me to go to Physical Therapy. No MRI!
December 2017 - PT doctor tests my strength - my entire left side is severely weak. I never noticed. She requests an MRI from the urgent care doctor despite their earlier reluctance.
MRI results in - moderate disc herniation at T8-T9. HAH! TAKE THAT YOU DUMB DOCTOR!
Meantime I can't sit for more than 30 minutes without excruciating pain.
Neurological problems start manifesting. First starts with Allodynia in my legs - I feel nerve pain everytime my pants touch my legs or with certain steps.
Numbness and tingling problems come back since I haven't exercised in weeks. Vertigo is creeping in.
I have a strange "pulling" sensation like a magnet is pulling me to the side.
Three nights in a row I have the most painful experience in my life. Were it not for my thoracic herniation, I would have called 911 thinking I was having a heart attack.
It starts with a band like sensation that wraps from my mid-back around my ribs and then tightens like a screwdriver until it feels like my ribs are going to be crushed and heart about to explode.
HORRIBLE INTENSE PAIN OH GOD WHY?!?! (side note: people describe the "MS HUG" the same way - although I wasn't familiar with that term until recently).
January 2018 (Worst time of my life!! Relapse???) - Physical Therapy is making things worse? Desperate for help, I reach out to a spine surgeon office. They take their sweet time getting me a first appt.
Sitting at work doing my thing and - OH MY GOD WHAT THE HELL IS HAPPENING TO ME - the worst episode of vertigo yet.
I have a screaming tinnitus, photophobia, and the magnetic tugging sensation is 10x more powerful. Is this permanent?!?! Go to ER and they give me xanax, send me home. Xanax does NOTHING.
Finally see the spine surgeon doctors and they conduct a thorough examination. My reflexes are absent in my left arm, and hyperactive in my right foot. They can tell something is very wrong.
Spine doctors tell me I need to see a neurologist but they want to order a neck MRI (great idea!).
Neck MRI is performed, I ask for a CD and review it - I immediately see my neck is much worse than in 2015, and spinal cord compression is present.
I get the MRI results in the mail and it only notes mild disc bulges - I notice it's the same radiologist from 2015. Start getting angry and suspecting incompetence.
A week goes by and I see the spine doctor for follow up, "the MRI report says your neck is fine".
I ask to review the MRI together - I never mention that I already saw compression. As we're flipping through the stack, the doctor pauses then promptly leaves the room to consult the head surgeon who schedules a next day follow up to discuss surgery.
I see the head surgeon and he wants to do an artificial disc replacement at C5-C7, we just need to wait for insurance approval.
The next day my symptoms are at the worst they've ever been, I can't walk right and bumping into walls. Handwriting is not readable. I call the spine center and they say go to the ER.
Meet the head surgeon's colleague in ER, he tells me I need surgery soon due to cervical myelopathy or end up paralyzed. Unfortunately he's unfamiliar with the artificial disc replacement process
and my surgeon is out of town - he wants to do an ACDF procedure (fusion) at the two levels. Feeling like I have no choice, I agreed.
Surgeon says he will perform surgery on the next day since I ate already and need 12 hours no food or water. He says he's going to pump me full of the strongest steroids to reduce inflammation.
Surgery went (mostly) well, I wake up and NO SYMPTOMS!!!!!
The next 24 hours are awesome - no symptoms other than weakness which makes sense given I was just put under for 5 hours.
At the 48 hour mark I notice the twitch in my foot is back - uh oh. I go into denial and think it's fine. My surgeon reassures me that it will take many weeks for the nerves to calm down
from the inflammation. I start thinking what if the strong steroids got rid of my symptoms and it wasn't the surgery???
Day 3 I'm discharged from the hospital. I go home and attempt to use the restroom. I noticed I have saddle numbness, so I call the spine center and they say go back to the ER.
At the ER I'm examined from head to toe and discover my entire left side is numb!!!
MRI of head, lumbar, and thoracic spine are conducted. T8-T9 herniation still there, L5-S1 disc is bulging. No lesions on brain MRI. I'm sent home.
February 2018 - For the next several weeks post-op, many of my symptoms start returning but no vertigo. I've seen my surgeon for a follow up and he's convinced this is an
issue with the central nervous system as everything above my neck (tinnitus, facial numbness/pins and needles) can't be explained by the spinal cord compression or surgery I had.
I explain to them that everything I do seems to have a mechanical trigger.
For example, about 5-15 minutes after a shower, I start getting fatigue, loss of balance, and heavy tinnitus and loss of proprioception (I can see my arms and legs, but can't FEEL they are there, especially with eyes closed).
I have another electrical shock attack on my left eye. I remember the first one from many years ago so clearly, this one was just as painful. My right eye goes blurry for a few hours.
Repeated calls and appointments with spine center result in no answers - they want me to maintain my upcoming neurology appointment "to rule out MS". Crap. Here we go again.
March 2018 - It's a Friday and I'm actually excited to see the neurologist (an MS specialist) for answers. Neurologist comes in, asks about my symptoms and proceeds to doing a nerve conduction exam.
Exam is painful, but results are normal. I told her that multiple brain MRIs show I have no lesions, so I don't think I have MS and it has to be my spine.
Doctor says "but your symptoms indicate a central nervous system problem, not spinal - I'll have to check your MRIs again and possibly order a spinal tap".
I called 4 days later - Monday - to ask about the spinal tap and follow up. I was told the neurologist had retired. I waited MONTHS to see the neurologist and the doctor RETIRED?!?!
How could a neuro retire without letting their patients know? Why even take a new patient?
I ask to see a new neuro - they can't, they are transferring to a new hospital and the medical system is down. "Call back next week". It's been two weeks and I've called many times with no luck.
WELCOME TO LIMBO
A new symptom appears - for some reason, stroking my face sometimes triggers intense and very painful nerve pain in my jaws. I later find out this is trigeminal neuralgia.
Another strange symptom - sometimes it feels like a glove is shrouding my right hand.
Desperate, I begin the process of self-diagnosing once again. I start writing down my symptoms and their triggers. I noticed that my symptoms happening after a shower might not be
entirely mechanical, but it could be heat intolerance. Overheating from alcohol or sitting too long in the sun also seems to trigger my symptoms. I also notice that my thoracic spine pain
is always involved right before I have an exacerbation of symptoms.
Looking over my MRIs obsessively, I noticed something is not quite right with my thoracic spine. After much research I suspect a CSF leak at the site of my disc herniation. Schedule appointment with PCP to talk about this.
The things in bold are what stand out to me. They make me think "what if this really is MS?". I have no idea and to tell the truth I don't care if it is; I just want a proper diagnosis on my condition so I can be better prepared and not look like an idiot when i'm telling people i'm not drunk - I have neurological problems!!
I have looked into it, but I'm not at the stage where it's necessary and hopefully will never be
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